Since Oregon’s Death with Dignity Act was passed in the mid-1990s, doctors have had to reconcile their Hippocratic oath with prescribing medication to end a life. Here are the experiences of some doctors in the state.
Dr. Eric Walsh
In 1994, Dr. Eric Walsh wrote an article in a local newsletter explaining why he voted against legalizing medical aid in dying. Walsh, a medical director of a small hospice, wrote that it would be impossible for a doctor to know a patient well enough to make such a crucial decision.
By the time the law came into effect in 1997, Walsh realized that he had written about one of the central fallacies of being a doctor — that you can know a patient better than they know themselves. “It’s the patient who has the disease, not you,” he said. “I just have to be there to listen to them, decide they’re not mentally ill, decide they have six months to live, and let them control the timing and manner of their death.”
Walsh said the first request he received was a profound emotional experience. The patient, a well-educated man with a strong marriage, had terminal cancer and was in so much pain he had to lie on the floor of the doctor’s office. Walsh wrote the prescription, but patient never used it.
“I can’t tell you how relieved I felt,” Walsh recalled. “It’s like an insurance policy against suffering.”
The palliative-care doctor has written 20 such prescriptions in 18 years, but one of his patients was Brittany Maynard, a 29-year-old newlywed with a terminal brain tumour who moved from California to Oregon for aid in dying in 2014. She became the public face of the assisted-death movement in the U.S., prompting her home state to recently adopt legislation.
Walsh’s voice changes as he speaks about Maynard, making clear the emotional bond forged between doctor and patient in these cases.
“She was an amazing human being,” he said. “She was brilliant. She spoke in paragraphs that sounded as though she had written them out and edited them … She was very clear-eyed and thoughtful and intent.”
Asked how he felt when she used the medication, he replied simply, “really sad.”
Dr. Kenneth Stevens
Jeanette Hall was inconsolable the first time she met Dr. Kenneth Stevens. It was 2000, and Hall had been diagnosed with inoperable anal cancer. As she was leaving the hospital, she said a staff member asked her whether she had a burial plot. She was unequivocal — she wanted aid in dying.
Stevens, an oncologist, explained that while her tumour was inoperable, it could be treated with chemotherapy with a good chance of success. Hall refused. Without treatment, she had six months to live, meaning she qualified for aid in dying.
After about four weeks of urging her to do the treatment, Stevens learned she had a son training to be a police officer. “Wouldn’t you like to see him graduate?” he asked her. “Wouldn’t you like to see him get married?” Finally, Hall agreed to the chemotherapy. The tumour melted away.
Sixteen years later, Hall credits Stevens with saving her life. “If it weren’t for Dr. Stevens, I wouldn’t be here,” she said, beaming. “It’s great to be alive.”
Doctors who support the law are dismissive of Hall’s story. Dr. David Grube said any reasonable doctor would have urged her to undergo the treatment, while Dr. Peter Reagan said the story is proof the law enabled doctor and patient to have difficult conversations openly.
But Stevens, president of opposition group Physicians for Compassionate Care and who, like the group’s national director Dr. William Toffler, lost his wife to cancer, takes a different view. He said Oregon’s law has allowed some doctors to lose touch with their purpose — to cure patients.
“The law is to protect the physician, it’s not to protect the patient,” he said. “As long as the patient qualifies, it’s a licence to kill.”
Dr. Peter Reagan
When Dr. Peter Reagan voted for medical aid in dying in 1994, he was more concerned with another measure on the ballot to fund libraries. He hadn’t thought much about how the Death with Dignity Act would impact his work as a family doctor, until the law finally came into effect in 1997.
The following year, he was referred an 84-year-old patient who’d had breast cancer on and off for 30 years. She was suffering, terminal and unwavering in her request for aid in dying. “She was very, very clear,” Reagan recalled. “There was just not a scrap, shred of doubt about her.”
It was only when he called the pharmacy that he learned he was the first doctor in the state to prescribe the medication. Although doctors are not required to be present, he was with her family when she died. Before she took the pills, she asked him to kiss her on the cheek.
“Somebody says to you, ‘I want to talk about the possibility of aid in dying,’ all of a sudden you’re in their family. Suddenly, you’re intimate,” he said. “With her, I almost felt like I was on board. I was dying too. The idea that I would wake up the next morning — I hadn’t thought about that until it happened.”
Reagan, now retired and a spokesman for advocacy group Compassion and Choices, said the emotional intensity of the experience grows with each person who requests aid in dying. He said he never suggests using the law to anyone and prescribing the pills is a difficult thing to do every time.
“People have to talk you into it,” he said. “The moment when they actually successfully talk you into it and you say, ‘You know what, I see your point, I respect it so much and I respect you so much that I will do this for you,’ that moment is so filled with relief and appreciation.”
Hospice nurse Jen Moss admires the spirit of patient Jody Wooton
Jen, 41, did not set out to become a hospice nurse, but she feels compelled by a tragic past
Jody, 64, is one of a growing number choosing to die on their terms
On Sept. 24, Jen Moss (right) took Jody Wooton to Kauffman Stadium, where they cheered as the Royals beat the Seattle Mariners 10-4 to clinch the American League Central Division on their way to winning the World Series. Both kept a copy of this photo.
BY ERIC ADLER
Jen Moss took to Jody Wooton from the first moment they met.
Jen, 41, the hospice nurse. Jody, her irreverent patient, all but spitting in the eyes of her doctors.
‘Refuse treatment and you won’t live two months,’” Jody remembers one doctor chiding her. Jody, 64 and with a wilting heart patched together with a quilt of 11 stents, glared back at him through rectangular glasses.
“Only two months? I usually get four, you know!”
Jen, whose own life has been touched by violent death in ways few have experienced, so wants to give Jody the good and peaceful death she deserves.
Jen admires her spunk, seeing behind what even Jody’s family recognizes is a sometimes cantankerous cover.
The way Jody sees it: hell if she is going to take more of that “crap,” as she puts it, from some pissant physician who felt it was his duty to pump her full of meds and IV fluids until her body bloated and her fingers swelled like blood sausage. It had happened before.
“Couldn’t wear my clothes,” Jody complains.
Three times over a decade, doctors said she might die from her bad heart. In March 2015, she actually did, but doctors jolted her back.
When she woke in recovery, oxygen and IV lines crisscrossing her body, she excoriated hospital workers.
“I said, ‘What the F are you doing?’ I had a DNR!” — a do-not-resuscitate order. But the hospital couldn’t find its copy, so the doctors brought her back to life.
After that, she was fed up.
“Wouldn’t back down for anything or anybody,” says Jody’s brother, John Kerby, 54 and a trooper with the Kansas Highway Patrol. “Everybody was a friend, unless you gave her reason not to be.”
So that was it. Call hospice, Jody told her sister. Jody was already widowed, terminally ill, no kids.
“I will be here as long as I’m supposed to be here,” she says now. “Nobody is going to tell me that I have to do this right now, or that right now.”
She will die on her terms.
“If I’m doing this,” Jody says, “I’m doing it my way.”
It’s a choice that ever more people are making in the United States. From a handful of nonprofit programs in the 1970s, hospice care has exploded to more than 6,100 programs, most of them for-profit today. Hospice now is a $15 billion a year industry.
Of the 2.6 million Americans each year who die, almost half, 1.2 million, die in hospice care. Their family members can take some semblance of peace knowing they died not alone in a hospital, but among loved ones in the place they saw as home.
Jen works at Kansas City Hospice & Palliative Care, which was one of the first hospices in the area when it opened in 1980 with two nurses and 13 patients.
Today the nonprofit employs 177 nurses, along with chaplains, social workers, counselors and nurse aides, who care for some 2,300 patients a year. There’s Jen’s “blue” team for home care, a “red” team for nursing homes, a “gold” team for both and a “carousel” team for terminally ill children.
The program is only one inside a crowded field of nearly 40 Kansas City area hospices. Elaine McIntosh, president of Kansas City Hospice, calls it “one of the most competitive areas in the country.”
Job chooses Jen
Neither Jody nor Jen anticipated the connection they’d find in hospice.
On a chilly morning in February, the nurse, just over 5 feet tall and with a tumble of shoulder-length black hair, rolls her silver Ford Fusion to a stop across the street from Jody’s home in the Overland Towers Apartments, an eight-story complex for senior citizens at 86th and Farley streets in Overland Park.
She gathers her belongings, grabs her stethoscope and checks her satchel, which contains a tablet computer with the names and medical records of Jen’s 13 patients: another woman, 64, dying of congestive heart failure; a 66-year-old man with Alzheimer’s; a father of three children, age 60, with bone cancer.
Among the patients she will see later: Al Jensen, a 90-year-old Navy veteran of the Normandy invasion who until recently has been as healthy as a war horse. His goal was to live 10 to 20 more years, but that was before doctors discovered more than a dozen cancerous tumors riddling his insides.
“Morning,” Jen says cheerily as she enters the Overland Towers lobby. A smattering of residents with canes or walkers smile and wave from their chairs.
Truth be known, as a self-described optimist and mother of three lively sons, Jen never in her wildest imaginings thought she’d be doing this job.
When she started her nursing career, it was in a hospital’s orthopedic/neurological unit, followed by neonatal intensive care. She moved to a dermatology practice and had a friend who’d become a hospice nurse. Jen recalled thinking, “Who in their right mind would choose to be surrounded by dying people every day?”
At Rockhurst University, one of Jen’s nursing professors spoke glowingly about it.
“My God,” Jen remembers thinking, “that sounds awful.”
But after two years with Kansas City Hospice & Palliative Care, she has come to experience the job’s grace, along with the deep, even spiritual satisfaction that accompanies her connection to patients and their families at one of the most difficult moments in their lives.
More, Jen wonders whether this is what her grandmother was talking about when she assured Jen, especially in her darkest moments, that “God has a plan for you.”
“Sometimes you don’t choose a job,” Jen says. “It chooses you.”
Who better to choose than someone like Jen, with a tragic past few could fathom?
“My sister says I should have been on the Oprah show,” she says. “My whole life has been dramatic, surrounded by death. My life has led me up to this job.”
Living around death
If divine or cosmic plans exist, Jen would argue that hers was set in motion months before she was born. That’s when her biological father, at age 23, died in a car wreck. Her mother, married at age 18, was just 19 and three months pregnant with Jen. Now she was a teenage widow.
Years later, as Jen herself was turning 19 — a year after her graduation from Park Hill High School — she also became pregnant and in 1994 had Neil, the first of her sons. Becoming a nurse had been a lifelong goal, “but college went by the wayside,” Jen says.
Instead, as a single mom, she worked for years as a waitress and bartender on the County Club Plaza, where she fell in love with Eduardo Gonzalez, a handsome dishwasher from Mexico.
They married in Las Vegas. They had a son, Frankie, in 2000. The family of four was happy.
Until, on a September night in 2002, Eduardo went out with his brother. Jen had an ill feeling.
“That night I knew. I just knew,” she says. “I’m like, ‘Don’t go. Don’t go.’ He’s saying, ‘Why not?’”
The call later broke the night’s silence: Come quickly to St. Luke’s Hospital. There had been a fight and, as Eduardo ran to protect his brother, a gunshot. Jen burst through the emergency room doors and was given word.
“I heard screaming,” Jen recalls. It filled her head but seemed far off. The voice was hers, echoing in her ears as she disassociated from the tragedy. “The next thing I know, I’m against the wall on the floor.”
Jen was 28, widowed with two children. Family and friends gathered around her, including her cousin, Tony Rios, who was Jen’s age, and Olivia Raya, Tony’s 26-year-old girlfriend, who was soon to graduate from Rockhurst University. It was Olivia who had been urging Jen to fulfill her dream: Go back to college. Become a nurse.
Then, three months later and days before Christmas, Jen had a dream. It was beautiful.
“I’m sleeping,” Jen says. “It’s like a white light, and we’re like spinning in a circle: me, Tony and Olivia. And they’re telling me that they’re OK, everything is going to be OK. It was just this overwhelming calm. I was like, ‘Oh my God, I have to call him.’”
The next morning, a call came her way.
Tony and Olivia were dead, slain in their Kansas City home in a robbery/drug deal. Olivia, who had just graduated from Rockhurst, had been writing thank-you notes when it happened.
Jen loved her wayward cousin deeply. She had been aware that he dabbled in drugs but had no idea how seriously deep it had become.
Still grieving after the murders, she entered nursing school, where she would hear the professor talk about hospice. Married again in 2009 — to Micky Moss, a Sprint engineer, and after having a third son, Everett — she thought she had something to give.
Jen knew grief and the complications of families. Having experienced violence in life, having seen how impersonal and undignified death could be, she thought maybe she could turn it into something more graceful.
Stories of intimate connections with death are hardly uncommon among those who choose to become hospice workers. Nurse Julie Griggs, 59, who trained Jen, came to hospice 12 years ago after spending 12 years treating patients in hospitals, where she thought so much of care, including death, had turned too clinically rote and impersonal.
Like Jen, colleague and social worker Crispian Paul, 37, had also experienced tragedy, the death of her 16-year-old sister in a wreck when Crispian was 12. Her mother later died of domestic violence. Crispian wanted to help others, possessing what she calls “a comfort level” with dying.
So it is with Jen.
“I do feel like because I have had a lot of loss and have lost a spouse — I don’t know exactly what all families are going through — but I know I can offer them some empathy, and some support and just” — Jen pauses before continuing — “some kindness.
“I mean, I get so much out of it as well. I meet all these families. You know, they’re trusting me with this, this such special, horrible time in their lives. I feel like I can help support them.”
Caring, not curing
At Overland Towers, the elevator carries Jen to the seventh floor. She turns right to Room 707, with the name JODY spelled out in purple, Jody’s favorite color. Black and white stickers of puppy paw prints run up and down the door.
“Jody loves animals,” Jen says.
Cats. Dogs. A ferret. Years back, Jody volunteered for a pet rescue group. Sometimes she had six or seven dogs, plus cats, before she moved to the towers.
Jen, to be sure, can’t precisely predict how much time Jody has to live.
“I’ve see her declining quite a bit in the last three months,” Jen says. “She possibly had a heart attack, a mild one, three weeks or a month ago.”
But there is no going to the hospital. That’s not how hospice works.
“I treat her pain,” Jen says.
As common as hospice has become, workers, indeed, still find it necessary to educate people on exactly how it works.
A common mistake is to link hospice care to euthanasia or physician-assisted suicide. The notion that hospice workers give patients medications to hasten their deaths is utterly wrong.
Instead, the essence of hospice is caring for patients as they move toward the end of life, in peace and with minimal pain. As the National Hospice and Palliative Care Organization puts it, hospice is about “caring” for one on the journey toward death, as opposed to “curing.”
To be eligible for hospice care, a person must be judged by a physician to be terminally ill and — making the choice to no longer seek curative treatments — likely to die in the next six months. Ninety percent do. Half of hospice patients in 2014 died within two weeks.
Jody is rare. She has been on hospice for a year, which is allowed if regular medical evaluations find the patient’s health has continued to decline in a way that makes death likely, and soon.
Once someone is on hospice, Medicare, Medicaid or private health insurance picks up the tab. Hospice patients receive a host of services including regular nursing care, prescriptions for pain and comfort, a hospital bed, a wheelchair, oxygen, help with bathing, social work and chaplaincy services.
In general, there’s no rushing to an emergency room for curative care.
“Medicare won’t cover any hospitalization,” Jen says. “They won’t cover any treatments. No diagnostics. If you’re on hospice, they’re paying for hospice.”
You can change your mind. People do revoke hospice. Some even rally and improve enough to go off hospice, then come back if they again decline. Some people on hospice choose to be resuscitated, wanting to eke out every minute of life possible, even when they are terminal.
“It’s their choice. We respect it,” Jen says.
But Jody, with her DNR order, does not want that. She is not getting better. She and Jen feel lucky that the year they’ve shared has allowed them to bond.
Similarly, Suzanne Fuller, 41, has bonded with Jody as her bath aide.
One of Jody’s problems, diabetes, caused her to lose the bottom half of her left leg. Sometimes Suzanne accidentally will step on her prosthetic foot.
“Ouch!” Jody will yelp, then, “just kidding.”
Big heart, big personality, no complaints. They laugh and laugh. Jen feels the same.
“I’m really going to miss her when she goes,” Jen says.
She knocks on the apartment door and calls out.
“Jody? It’s Jen.”
No answer.
“Jody?” she repeats, her voice a bit more concerned.
Silence still. Jen turns the knob. The door, unlocked, opens.
No sound from the other side, and Jen calls once more.
“Hello?”
Monday: For her own dignity and peace, Jody prays her death will be quick, no bother to anyone.
Kathy Pfaffenbach has volunteered at Mercy House of the Southern Tier since it opened. She helps provide comfort and care to terminally ill patients.
Kathy Pfaffenbach can understand how some people don’t want to think about the issue of death and dying.
But three days a week, the 64-year-old Binghamton woman confronts this reality up close and personal as a volunteer at Mercy House of the Southern Tier — the first home for the terminally ill in Broome and Tioga counties.
She considers it a privilege, not a burden. “Death is so private and personal. I feel humbled that (the residents) allow me to become part of their daily lives,” she said.
Pfaffenbach began volunteering the first day the nonprofit community care facility opened in early March. She’s one of more than 200 volunteers — along with three full-time and seven part-time staff members — who staff the Endicott facility 24 hours a day, seven days a week.
One of Mercy House’s core missions is ensuring “nobody dies alone,” and volunteers are essential in fulfilling this mission, said Amy Roma, director of resident care. They cook, they clean and they help residents with personal care. Just as importantly, they sit with residents, providing companionship and caring as the terminally ill reach the end of their lives.
“So far, we’ve had six residents die, and nobody’s died alone,” Roma said, with a touch of pride.
Pfaffenbach started volunteering eight months after retiring as supervisor of emergency services for Catholic Charities of Broome County. In that capacity, she helped provide in emergencies and directed two food pantries that served some 5,000 people each month.
“That was a feel-good job. When you unlocked the building in the morning, you knew you were going to make a difference in someone’s life,” she said.
She found she missed working with people after spending 27 years with the agency and was looking for something to fill her days.
“Retirement’s not what it’s cracked up to be,” she said, with a laugh. “How many times can you clean your house?”
Sitting home gets old fast if you don’t have a purpose to get up in the morning, but Mercy House provided that purpose. “It’s a way for the whole community to embrace a person as they make their next step into eternal life,” Pfaffenbach said.
The facility, which opened after several years of planning and fund raising, is in the former St. Casimir’s Church, at 212 N. McKinley Ave. in Endicott. Modeled on a similar facility in Syracuse, the 10-bed home will serve patients who have been diagnosed in the last months, or weeks, of their lives and can no longer stay in their own homes.
The facility is bright and airy, with a lounge area for residents and their families, and a nondenominational chapel. Staff work to make it as close to home as possible, Roma said, including personal touches. When a resident dies, staff place a rose and prayer card on the bed so friends and family can spend a moment remembering the person.
Organizers call it a leap of faith. The annual cost for Mercy House is about $600,000 a year and will be paid mostly by donations and fundraising.
As a volunteer, Pfaffenbach spends two days a week helping to made breakfast for residents. The third day, she works as a caregiver, doing a variety of jobs. She takes residents to the bathroom,brings them to the dining room or simply sits with a resident. Sometimes they talk; sometimes she just provides quiet comfort.
“Kathy is a great volunteer. You can tell when she comes in that she loves the residents. She’s here for all the right reasons,” Roma said.
Pfaffenbach’s first job at Catholic Charities was working in the pregnancy and foster care program, she said. She saw the beginning of life, and now she’s seeing its end.
The most challenging thing about this work is seeing a relationship end when someone dies, she acknowledged. Residents become part of the fabric of your life, but fabric wears out, she said. Still, it’s always replace it with another thread, Pfaffenbach added quickly
Every time she walks into Mercy House, she feels a sense of peace and tranquility. Some deaths are easy and some are hard, but when you see them as the next step into eternal life, it’s not fearful, she said.
A woman with ovarian cancer who came to see internist Leslie Blackhall was very upset. The woman’s oncologist had told her it was time to discontinue treatment — that it was doing more harm than good. Blackhall knew that the effects of more chemotherapy would be intense and would compromise this patient’s immune system while buying her only a bit more time. So she asked thewoman, who was in her 60s, what she would do with more time. The response: Have more chemo, on the chance it might let her live longer.
Medical advances bring the promise of extending life, but some of the treatments used in a person’s last months, weeks or days — such as CPR for failing hearts, dialysis for failing kidneys and feeding tubes for those unable to nourish themselves — often do not provide more time and can worsen quality of life.
Yet saying no to more treatment is tremendously hard to do, whether that decision is made by patients or by relatives for patients who are too infirm to express themselves.
“People don’t have a good way to think about end of life,” said Blackhall, an associate professor of internal medicine at the University of Virginia Health System in Charlottesville. “If we tell people, ‘Chemo isn’t going to help you,’ they still want it. We [all] want a peaceful, comfortable, dignified death . . . but not yet,” she said.
So what has research found about commonly used end-of-life interventions? Which ones can be useful and which are not, and when should they be administered?
Resuscitation
CPR is just one of the treatments offered in hospitals and other medical settings with the purpose of keeping people alive so an underlying health condition can be treated. For instance, a young and healthy person who has a major allergic reaction to a drug can be given CPR to bring them back and treat the reaction.
But CPR is frequently used even when there is no intervention that can prolong life. For a person with metastatic cancer or late-stage dementia whose heart stops beating, the odds are quite low that resuscitation will be lifesaving, said Blackhall, who began studying this issue in the late 1980s.
Numerous studies have borne this out, one of the most recent being a2009 analysis in the New England Journal of Medicine that looked at more than 400,000 people older than 65 who received in-hospital CPR. Researchers found that only 18 percent survived long enough to be discharged. The survival rate dropped at higher ages, with only 12 percent of those 90 and older recovering enough to leave the hospital.
“It is less likely to work when the cause of heart stopping is something you can’t fix to begin with,” such as terminal cancer, Blackhall said. “They are dying, and if they survive that 15 minutes, [the process of CPR] often breaks their ribs. They will end up in the ICU with a catheter, a tube down their throat and another one to feed them.”
Dialysis
When dialysis, which removes waste from the blood, was introduced in the 1940s, its purpose was to keep young people with acute renal failure alive until their kidneys began to properly function again.
Today, an estimated 650,000 people have end-stage renal disease, more than 70 percent of whom are on dialysis. The typical patient on dialysis is 65 years old, and the fastest-growing group is individuals who are older than 75. The treatment is used in approximately 90 percent of elderly people with end-stage renal disease, according to 2013 research in the journal Aging Health. Acute failure, particularly in young people, can be reversed, allowing them to live long, healthy lives. Dialysis, however, doesn’t cure end-stage renal disease.
“People aren’t ‘choosing’ dialysis — they are being directed toward what is available, and what is available is more,” said Kaufman, who chairs the department of anthropology, history and social medicine at the University of California at San Francisco. “Patients are not getting better; they are just hoping not to get worse.”
In many cases, dialysis does not lengthen the lives of older, frail patients. And even when it does, that extra time can be problematic. Researchers from the Johns Hopkins University School of Medicine found that frail, elderly dialysis patients had a 40 percent mortality rate after three years compared with a 16 percent rate for healthier patients receiving the treatment. This is, in part, due to the toll dialysis can take on the body.
A New England Journal of Medicine article from 2009 looked at more than 3,500 patients with end-stage renal disease starting dialysis in U.S. nursing homes. Researchers found that 39 percent retained kidney function three months after initiating treatment; but at 12 months, only 13 percent maintained it and more than half had died. The study authors concluded that dialysis in this patient population is associated with a “substantial and sustained decline in functional status.”
Patients do have a choice about undertaking dialysis, but Kaufman contends that the medical system makes it extremely hard to say no.
People are directed toward dialysis because of health care’s love of technology, its fee-for-service system and the specter of litigation hanging over hospitals that do not use all their resources to extend life, Kaufman said. Also, terminally ill patients often have a strong will to live, and they feel as though they are “choosing death” if they opt out.
Kaufman recounted the case of a physician friend with end-stage renal disease who opted out of dialysis, concluding that the hours attached to a machine and the treatment’s side effects — including fatigue, low blood pressure, blood poisoning and muscle pain — were not worth it. “Because he was a physician, he knew,” Kaufman said. “Doctors don’t want for themselves what they do for their patients, and that’s what patients need to know.”
Joseph Gallo, a professor at the Johns Hopkins Bloomberg School of Public Health, surveyed aging physicians about their thoughts on end-of-life treatments. When asked if they would want dialysis (given the scenario that they had a brain injury rather than a terminal illness), nearly 85 percent said they would turn down the treatment.
Feeding tubes
As dementia advances, people tend to be less interested in food. They become more likely to fight someone trying to feed them, choke when swallowing food or keep it balled up in their cheek instead of swallowing.
Feeding tubes are often used to bypass these issues. The idea is that the tubes provide nourishment to prolong life while avoiding aspiration pneumonia (where food goes into the lungs rather than the stomach) and decreasing the risk of pressure ulcers, a breakdown of the skin from something rubbing against it.
Nearly a third of the people in U.S. nursing homes with cognitive impairment at some point are given feeding tubes, according to a 2010 article in JAMA. But a recent study in the Archives of Internal Medicine found that feeding tubes didn’t reduce the chances of pressure ulcers among nursing home residents, and doctors say aspiration pneumonia still occurs when stomach contents back up into the esophagus and then into the lungs.
“It turns out that, at the point in time when people develop problems with chewing and swallowing and eating, their dementia is quite advanced and they don’t have a lot of time left anyway,” said Muriel Gillick, director of the program in aging at the Harvard Pilgrim Health Care Institute.But, she said, “it is hard to say to a family, ‘Your mom has trouble swallowing, so we are just not going to give her anything to eat anymore.’ Families want it because feeding someone we love is our way of nurturing and showing we care.”
Feeding tubes, like dialysis and CPR, are often provided in many health-care settings because patients and families aren’t offered alternatives that seem acceptable as the end approaches.
“What matters most is a person is comfortable . . . and I think generally we have ways to achieve this that don’t involve sticking tubes in people,” Gillick said. Ice chips can be offered to assuage thirst, and reading to people, holding their hands, keeping them warm and dry are all sustaining activities that improve quality of life. These things shouldn’t be thought of as “trivial or fluff,” she said.
“All of us are going to die,” Blackhall said. “The question should be how do we want to live — what do we actually want to do with that time? Let’s make sure that whatever time you have, you can do those things.”
Dying at home is widely celebrated as the pinnacle of a ‘good death’. It is therefore unsurprising that governments internationally are framing current moves to increase the numbers of people dying at home as a ‘win-win’ situation. People get what they want at the end of their lives and the health system saves money. Result! However, is it really that straightforward? Increasingly, our research group has been thinking about the unpaid workforce we rely on to enact home dying. Who are they? How does this caring work impact upon them physically, psychologically, socially and financially? Why are they so invisible?
It was these questions that drew us into thinking about the gendered nature of palliative care. For this workforce is overwhelmingly made up of women, predominantly older women, whose contribution is overlooked, we would argue, largely because such caring tasks are regarded societally as women’s work; as a normal and natural part of women’s lives in line with their caring, kind, and maternal nature.
When we looked into what little has actually been published on this topic, we found that women who were providing care to a family member at end of life were suffering from a vast array of physical and mental health problems directly resulting from their caring roles. We found that women continue to shoulder more of the caring burden themselves without asking for formal assistance, even when they themselves were in poor health. What’s more, because societies across the Western world are ageing rapidly, and women consistently outlive men, this situation is only going to get worse.
It’s also important to look at what kinds of care women are providing. Women are more likely to provide intensive personal care, and are twice as likely to provide toiletry assistance as men. Conversely, men are more likely to treat caring as a job and welcome extra support in all aspects of care.
Overwhelmingly, this disparity both in the number of women caring than men, and in the differing nature of this care, results from women’s adherence to gendered expectations, from both their families and society in general, that this is something they must do.
It may seem like we’ve painted a fairly gloomy picture, but what is far more concerning is that the picture remains incomplete. Research into palliative care from a gendered perspective is sorely needed if we are ever going to formulate effective strategies to mitigate the impacts – both mental and physical – that women disproportionately experience when providing palliative care.
Its importance is greater still if we ever want to fully understand palliative care as a whole for it is overwhelming a women’s world; as much in the ‘informal’ home-setting as it is the ‘formal’ hospital, hospice and aged residential care sector. Women comprise the majority of palliative care professionals, carers and patients and it is about time we start considering how ideas of gender – the expectations shaping ideas of femininity and masculinity – pervade all aspects of end of life care.
Tessa Morgan, Merryn Gott and Lisa Williams
Te Arai Palliative Care Group, School of Nursing, University of Auckland
Ed: We thank the authors for sharing this timely and important work. We are also excited to announce that we will be working with the authors on a series of blogs exploring gender issues and palliative care.
‘There is nothing to do but wait and I see that you know how hard this is. You have seen this many times.’
When my father arrives in the hospice, there is a flurry of activity. Drug charts are checked, vital signs are tested. We all know he has come here to die, but still the idea is that something might be fixed, at least temporarily, and the young doctor and nurses on duty that evening have an air of “sorting things out”. It is a relief to get here; they know what to do. The flat has become a claustrophobic, smelly and unmanageable place for my mother to care for Dad.
The next day, you slide into the room like an elegant cat – without an entourage of junior doctors, a computer on wheels or a stethoscope slung around your neck. You lean over my sleeping father and take him in without saying anything, and then turn to my mother with a smile that is at once kind and serious.
You take us to a side room and tell us that he is nearly finished with his body now, that it is normal and natural and that there is nothing to be done except to keep him comfortable. You say it clearly and calmly, making eye contact with my mother. It is a beautiful day, and you suggest we take a walk and look at the sky, the daffodils, the trees beginning to bud. “He will be with you in these things,” you say, entirely without sentimentality. “It is time to let him go.”
For the first time in the entire period of my father’s cancer, my mother cries. Woman to woman, you look at her and she feels your genuine solidarity. It is a turning point, and from then on my mother prepares to cut free from her husband of more than 55 years.
Over the next days, when on duty, you appear quietly in the room with an aura of respect for the sacred space we have created with flowers, cards and drawings by grandchildren. You never talk loudly to my father as if he is deaf or stupid. You also never adopt the drippy, concerned tone often used by professionals with the ill or grieving. Your gaze is clear and direct, as is the information you give us. Dad is taking his time, he has things to say and his body is not quite ready to close down.
“This is not a medical condition we can treat, or something I can help with drugs or charts,” you say, as I pack away my violin after playing the Scottish folk tunes of Dad’s childhood to him. “This,” she gestures to my son sitting on the bed, the guitar lying on the chair, Mum holding Dad’s hand. “This is all that’s important now.”
There is nothing to do but wait, and I see from your experience and wisdom that you know how hard this is – this endless waiting, which is pregnant with ambivalence. You have seen this many times before.
Thank you for what Cicely Saunders (the founder of the modern palliative care movement) called the “depth of time” you have given to us. Perhaps you spent no more minutes with my dad than any of the other professionals. Perhaps you even spent less time, as you didn’t bother much with symptoms or drugs and interventions that we could all see were pointless. But you met my dying father, my mother and me with honesty, dignity and sincerity, and this is what we will remember and treasure.
‘It may be impossible to achieve consensus on many of the issues surrounding physician-assisted dying’
By Shimon Koffler Fogel
“Surely we can all agree that every Canadian should have access to other means of alleviating suffering before contemplating a physician-assisted death,” writes Shimon Koffler Fogel, CEO of the Centre for Israel and Jewish Affairs in Toronto.
Physician-assisted dying remains a deeply personal and contentious issue among Jewish Canadians. Some in our community support physician-assisted dying, focusing on the plight of those stricken by a terminal or debilitating illness with no possibility of pain relief. Others oppose physician-assisted dying based on traditional religious grounds or due to concerns about a knock-on effect toward more broadly applied euthanasia.
The Supreme Court of Canada decision in Carter v. Canada recast this vigorous debate by determining that Canadians, under certain circumstances, will have a right to physician-assisted death. The remaining question is how this decision should be implemented.
While there is a vibrant diversity of opinion among Jewish Canadians on this subject, there are also points of unity that reflect common values within broader Canadian society.
Who’s eligible?
One such point of unity comes in the form of concern over the eligibility requirements for physician-assisted dying. Many who support physician-assisted dying base their position on situations of terminal illness or advanced stages of severely debilitating and painful diseases for which there is no relief or cure. However, the Supreme Court decision did not limit physician-assisted dying to such circumstances.
Parliament must now choose between two distinct approaches to physician-assisted dying. The first views physician-assisted dying strictly as an end-of-life option, a means for those who are nearing death to choose how and when to die. This is consistent across all North American jurisdictions where physician-assisted dying is permitted, including Quebec.
The second approach, predominant in European countries like Belgium and the Netherlands, does not restrict physician-assisted dying in this way. In these jurisdictions, children and individuals with psychiatric disorders or minor medical conditions can be eligible for a hastened death — considerations that played no part in the Supreme Court determination.
Quebec’s physician-assisted dying law, which was subject to significant, thoughtful deliberation and passed with strong, cross-party consensus, could be instructive for federal legislation in this context. In Quebec, a patient seeking physician-assisted dying must be competent and fully informed, at least 18 years of age, at the end of life, suffer from an incurable illness, be in an advanced state of irreversible decline in capability and experience constant and unbearable suffering.
Concerns persist
Even so, significant concerns persist regarding the balance between the right to physician-assisted dying set out by the Supreme Court and the conscience rights of health-care practitioners, including physicians, pharmacists and nurses. Many have deep religious, moral and professional convictions that consider referring their patients to another, willing provider to be an unconscionable act.
Yet Parliament’s special joint committee on physician-assisted dying recommended that, at a minimum, health-care providers who object to physician-assisted dying for reasons of conscience should be required to provide a referral. This disregards the Supreme Court instruction that “the charter rights of patients and physicians will need to be reconciled in any legislative and regulatory response.”
Several viable options have been put forward to balance the seemingly competing rights of patients and health-care practitioners. For example, the Canadian Medical Association has proposed a “separate central information, counseling and referral service” to which objecting physicians would direct patients seeking physician-assisted death. Another possible accommodation would require an objecting physician to notify a designated administrator of their medical institution, who would then be responsible for transferring care in a timely manner.
Others have suggested a model where physicians would be required to report all requests for physician-assisted death to a government body that would have a registry of physicians to whom it could refer patients.
Pleasing all parties
Whatever the specific approach, with creativity and thoughtfulness, the rights of objecting physicians and patients can be harmonized. What’s more, such a process would likely facilitate improved access to physician-assisted dying for patients. The Canadian Medical Association estimates that 30 per cent of its members would be willing to provide physician-assisted death. However, it is unlikely that the remaining 70 per cent would know to whom they should refer a patient. A third-party agent would be well-suited to ensuring timely patient access while preventing the violation of physicians’ conscience rights.
Regardless, physician-assisted dying must not be the only, nor the default, end-of-life option available to patients. While respecting the division of jurisdictional responsibilities, the federal government should do its utmost to ensure that palliative care of the highest quality is universally accessible and that first-rate psychosocial supports are made available to all Canadians separately from physician-assisted dying. While it may be impossible to achieve consensus on many of the issues surrounding physician-assisted dying, surely we can all agree that every Canadian should have access to other means of alleviating suffering before contemplating a physician-assisted death.
