Stigma keeping some cancer patients from palliative care: study

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By LISA RAPAPORT

PalliativeCare_Img

Some cancer patients may turn down care that could ease their pain and improve their quality of life because they think this type of “palliative” treatment amounts to giving up and simply waiting to die, a small Canadian study suggests.

Even though the World Health Organization recommends early palliative care for patients living with any serious illness, negative attitudes among patients and family caregivers often lead them to reject this option, researchers note in the Canadian Medical Association Journal.

“Patients and caregivers in our study saw palliative care as being equated with death, loss of hope, dependency, and going into places you never get out of again,” said lead study author Dr. Camilla Zimmermann, head of the division of palliative care at the University Health Network in Toronto.

“This is in stark contrast with the actual definition of palliative care, which is interdisciplinary care that provides quality of life for patients with any serious illness and their families, and that is provided throughout the course of the illness rather than only at the end of life,” Zimmermann added by email.

Zimmermann and colleagues interviewed 48 cancer patients and 23 of their family caregivers in cases when life expectancy was six to 24 months.

The researchers randomly assigned 26 patients to receive palliative care in addition to standard cancer care, while another 22 patients had only standard care.

Twenty-two patients in the palliative care group and 20 in the control group were receiving chemotherapy.

Over four months, patients in the palliative care group had at least monthly palliative care clinic visits, while those in the standard care group didn’t receive any formal interventions. Caregivers could attend clinic visits for the palliative care participants, but they weren’t required to do so.

Patients were typically in their early to mid-sixties. Most were married and had at least some education beyond high school.

Most family caregivers were spouses, but a few were children or other relatives.

Initial perceptions of palliative care were similar in both groups – patients generally thought this was done only for the dying. While patients in both groups thought of palliative care as providing comfort, they also associated it with giving up on treatment.

Once some patients received palliative care, however, their thinking shifted. Some patients now saw this as a way to live life to the fullest despite the terminal diagnosis, while others suggested that doctors might have better luck renaming this as something other than “palliative care.”

Calling palliative care providers “pain specialists” because they treat discomfort and focus on quality of life would make this sound more appealing and less frightening, some patients said after getting this type of care.

But in the control group, without any experience with palliative care during the study, patients didn’t see the point of renaming it because they thought it would still carry the stigma of giving up and waiting to die.

“Palliative care should not be framed as a last resort option,” said Dr. Anthony Caprio, a geriatrician and hospice and palliative medicine physician at Carolinas HealthCare System in North Carolina.

“These ‘nothing left to do’ conversations often frame palliative care as a way to help people die comfortably, rather than an approach to care that allows them to live with the highest quality of life for as long as possible,” said Caprio, who wrote an editorial that was published with the study.

Using different language in discussions with patients can make a big difference, Caprio added.

“I often describe palliative care as an extra layer of support,” Caprio said. “Who wouldn’t want more support, especially during a difficult illness?”

Complete Article HERE!

Oregon’s aid in dying law: Three doctors reflect on their experiences

by LAURA KANE

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.

when doctors grieve

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.”

Complete Article HERE!

Death with options: How we bury our loved ones is changing

By Sybil Fix

Death with options1

The family of Mrs. Jean Dukes lowers her simple casket into the grave at Greenhaven Preserve. The natural burial is an alternative to traditional mortuary practices.

After burying her mother a few years ago, Sheila Holt found herself contemplating her own death.

There was no urgency to it: she was in her early 50s and in good health. But the Summerville health services online school teacher was not inclined to look at death shyly. With a career in nursing behind her, she felt an urge to plan for it and, specifically, for the disposal of her body.

Meditating, envisioning a reel of sensations, Holt quickly excluded embalming, for both the chemicals and the removal of the organs, which felt violating. And then caskets, too.

She considered cremation, and quickly discarded that option: Fire felt violent and destructive.

“It did not feel free to me. I want to view my death as freeing,” she said.

Frustrated, she turned to Google and read about something called natural burials and three places in South Carolina that offered them. On a rainy winter day, she and her husband drove two hours north to Eastover to visit Greenhaven Preserve, a 360-acre nature land trust where one can be buried in a simple shroud in the thick of the woods.

Walking the grounds, they came to a small clearing big enough to park a large SUV and framed gracefully by four hollies. The space seemed to suggest a bucolic grave. Suddenly, the sun came out and the dappled rays came to rest there.

“That was it. I looked at my husband and said, this is it. This is my afterlife spot,” Holt said. She paused in thought. “I have the deed and everything … I could not be more prepared and happy.”

Confronting our mortality and planning for it continue to be hard things to do. Yet, Holt may be representative of a significant shift not only in willingness to discuss death but to chart it so it can unfold in a way that is more truthful what we want for ourselves.

Once, said Archie Willis, president of McAlister-Smith funeral homes here, people did whatever the family did, on a spit of land that had meaning to them, united by the same religion and tradition.

Now families often are split by distance, divorce, second marriages and different religions. Those things complicate decisions regarding burial.

But other influences are budding as people question embalming and caskets, want ritual without artifice, want more individual choice and question their impact on the planet, even in death.

“There is an awareness and a demand for public information about choice that is unprecedented,”said Kate Kalanick, executive director of the Green Burial Council, based in California, which created standards for environmentally conscious deathcare.

College of Charleston professor George Dickinson, who has taught a class called Death and Dying for some 30 years now, calls us “a death-denying society.” But, he said, “the conversation is coming to the forefront. We don’t have to do what Mom and Pop did anymore and we are freer to be frank about it.”

Changing conversation

Every couple of months, people gather in small groups to talk about death. Called Death Cafes (and elsewhere, Death Over Dinner), people venture over food and drink into an uncomfortable conversation, but one that nearly everyone yearns to have.

The group’s foundational belief, “is that if we talk about death in an open way, people will make the most of their lives,” said Jan Schreiber, who retired to Charleston and founded the Death Cafe chapter here. “Talking about death clarifies your life.”

Some people come to talk about coping with dying; others want suggestions on how to discuss death with their aging parents. And some of the conversation is about planning, which nationally many are expressing a need to discuss.

According to the Funeral and Memorial Information Council’s Study of American Attitudes toward Ritualization and Memorialization, in 2015, 69 percent of adults over the age of 40 say they would prefer to prearrange their own service. It may sound like a chore, but, interestingly, the more planned it is, the better we feel about it.

Death with options2

Greenhaven Preserve offers spaces for natural burials.

“I think people are taking more control over their relationship with death,” said Dickinson.

In one large way, that means that people are beginning to question or revisit practices that, in some cases, have survived and been tweaked over thousands of years: among them, embalming and protecting the body in heavy containers that separate us as much as possible from nature. Now there are more options.

Ashes to ashes

The most obvious revolution in deathcare is the meteoric increase in cremation rates, which have gone from 25 percent in 2009 to nearly 50 percent in 2014 and is estimated to exceed 60 percent by 2025, according to the Cremation Association of North America. In favoring cremation, people cite lower costs, practicality and sometimes wanting to save space on Earth.

In Charleston, mecca for retirees and second-home owners, cremation rates exceed 60 percent, said Willis.

At McAlister-Smith, they handle so many that they have changed their logo. Meanwhile, the ways to memorialize cremated remains have grown proportionally: They can be made into diamonds, art, bird baths and reef balls. They can be launched into space or divided in vials that fit easily in a purse. A deceased loved one can come with us everywhere.

Memorial services for the cremated are often more elaborate and painstakingly planned than funerals at which the body is present, said Cynthia Linhart, McAlister-Smith’s director of support.

“Cremation opens the door to the possibility of multiple services and unique locations outside of church,” Linhart said. “They are real celebrations of life … I hear the most romantic of stories.”

But a newer urge is to achieve true dust to dust, the body returning to the soil, as it were, in its immediacy and purity.

Interest in green burial options has gone from 43 percent to 64 percent over the past five years, according to the FMIC study. In the past 10 years, since it began certifying green burial sites, the Green Burial Council has certified 54 cemeteries around the country; another 50 or so practice green burials though they are not certified, Kalanick said.

Green burial requires the use of nontoxic and biodegradable materials such as pine or sweetgrass caskets and cotton shrouds. It appeals to environmentally minded people but also people who feel connected to the land and, Kalanick said, observers of religions that cherish the belief in ashes to ashes. There is a newfound spirituality in the simplicity of nature, she said.

“It’s the most natural thing on Earth,” said Ronnie Watts, an amiable man who started Greenhaven Preserve with his nephew after reading an article on natural burials. “They were walking a pine box through the woods in jeans. I said, ‘That sounds good. I’ve never worn a suit in my life and I don’t want to wear one when I’m buried.’ ”

In the woods

The practice may sound revolutionary, but it’s ancient and legal.

In South Carolina (and most other states), it is legal not only to handle your deceased, but to bury them without funeral home or director, casket or embalming. While many may continue to rely on someone to take and transport a body — and funeral directors continue to be the preferred professionals to call for help — many people are also trending now toward rituals that seem less artificial and cumbersome.

At Greenhaven people get to choose a plot 10 feet by 10 in expanses of woods over rolling hills. Walking the grounds among the hollies, the dogwoods in bloom, the Bradford pears and pines reaching to the sky, the shrieks of birds and dodging of deer, one barely sees the natural stones marking the graves here and there.

Often the deceased are shrouded and lowered in the ground by their own family members. Families plant blooming bulbs on the graves and trees to shade them. There is no danger of tripping over another grave or cars driving by. And, said Watts, you can have a whole funeral for $2,500, including the cost of the plot, opening and closing the grave, and a shroud or pine casket.

“And you can come and stay as long as you want,” he said.

Pamela Horton, of Irmo, buried her husband, William “Steve,” at Greenhaven in 2014. They visited there after Steve was diagnosed with lung cancer, at 63. He wasn’t too keen on cremation; for her part, she didn’t want a casket or embalming. The concept of a natural burial appealed to them spiritually.

When they toured the grounds, they saw a spot they liked at the foot of a hill, facing the rising sun, a Biblical reference to Jesus’s return. They lay down on the ground together, side by side, like children making snow angels, “to figure out how we wanted to be,” Pam said, tenderness in her voice.

Some months later, Steve died, at home. He was washed and shrouded in a white sheet they had slept in together. The family had a gathering in the woods and they all shoveled in the dirt.

“It felt natural and right. It’s a good way to be buried. It’s the way it’s supposed to be,” she said.

Dying as we live

To accommodate this new appeal is a plethora of green products, including biodegradable shrouds, cardboard caskets and biodegradable containers for cremated remains that look like turtles and dissolve in water.

And ingenuity is taking it further.

An Italian company, Capsula Mundi, is proposing treed pod burial capsules in which tree saplings are planted in the earth with a body folded in a fetal position.

From death sprouts life, truly.

And a company called Coeio, in New York, is poised to release something called the Infinity Burial Shroud, a burial cloth woven of mushroom spores that degrade contaminants in the body as it decomposes.

“It would not be a far cry to say that people want to die the way they live,” said Mike Ma, co-founder and president of Coeio, citing market demand for hybrid cars and organic foods.

Since word of the company got out in the past several months, its mailing list has grown to thousands; they also have a list of hundreds interested in being early adopters of the death infinity suit.

“It’s growing into a movement that people are willing to put themselves into, literally,” Ma said.

Personally, development of the company clarified Ma’s life.

“If we come to grips with our death, we have the potential to live life better,” he said.

Complete Article HERE!

An unexpected friendship forms in hospice as the end of life nears

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.

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.”

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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.

Complete Article HERE!

Executive Producing Your Own Goodbye

My father-in-law was a planner his entire life. The end was no exception.

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Hollywood film industry producers or directors in a sound stage

Hollywood film industry producers or directors in a sound stage

We’re better at welcoming new life into this world than we are at saying goodbye. But some point we all end up on the off ramp, regardless of whether we choose to realize it.

But before we hit the exit, there are a few important things to consider: the body, the obituary, the service, and the afterparty. And my father-in-law, Hank, taught all of us how it’s done.

Hank died last January at 92. In December, two doctors declined to operate on his leaky heart valve. They didn’t think he’d survive. So we had a wistful but wonderful Christmas with him as he furniture-walked around the house, grabbing at table and counter tops with labored breathing until he finally settled in on the TV room couch.

Fortunately for all of us, Hank was an engineer and a planner. Years earlier we’d received a blue folder filled with notes on what to do in the event of his death.

He sent us these thoughts in the year 2000. He re-sent them in 2008, complete with an addendum from his wife called “When We Drop Dead.”

First was the body. Yale Medical School was supposed to get it. He left us the phone number and a name. This is actually more complicated than it sounds. You have to die in Connecticut. Yale has to receive the body quickly. And you need an authentic death certificate before they’ll take the body away.

Next, the obituary. Hank kindly provided the name and number of the New Haven Register obit section. And The New York Times’. My husband wrote it. That’s hard to do when you’re grieving. If at all possible, might I recommend writing an obituary in advance, when your head is clear and you have time to check the facts.

There are two kinds of obituaries: paid and unpaid. The paid have a just the facts, ma’am format. My husband wrote this long, heart-tugging piece about his dad’s rags-to-riches story of working hard and rising through the ranks until he was head of a manufacturing company. How his dad had never thought of going to college until a friend off-handedly told him, “Hey, you’re pretty smart. You should.” How he trained in World War II to be a dive bomber pilot (a profession in which half the men died). How when he was 13, he watched his own father drop dead of a heart attack while placing a star on top of the Christmas tree.

It was a lovely obituary. It was WAY too long. My husband eventually wrote a shorter, more bloodless, just the facts one for the paid section but it made him sad. His dad had been a prominent local philanthropist in New Haven. He’d given to hospitals, universities and schools.

Onto the service. I’m a comedian. Twice before he died, Hank asked me to host his memorial service. I said, “But Grandpa, I’ve never emceed a funeral.” He said, “Jane, it’s not a funeral. It’s a celebration of life. I want people to have fun. Tell them how I loved Scott Joplin and Broadway musicals like Oklahoma and South Pacific. How every year we went to the Messiah sing along at Yale because I loved classical music. And keep it to 90 minutes.”

I emceed. His two sons spoke—one at the beginning of the service and one at the end. So did all four grandchildren, who wanted to share stories about the great guy they knew: how he windsurfed until he was 85, let them drive as kids in his beat-up station wagon as they sat in his lap—unbeknownst to Grandma or their parents. Three representatives from his favorite organizations spoke. And two Scott Joplin piano interludes and one soprano singing Handel’s Messiah were woven into the program.

The obit that had been too long? That went into the program. The grandchildren put a copy on every seat.

The New Haven Register sent a reporter and a photographer. So much of New Haven showed up that it became the next day’s front-page story.

It would have been enough. But ever the planner, Hank had one last idea: the after party. At the end of the service, Charlie Salerno and the Clamdiggers their festive red-striped jackets playing Hank’s all-time favorite song, “When The Saints Go Marching In!” He had left us their card—the brass section marched to the stage and led a procession out the hall and directly toward the two bars that he’d drawn in his notes.

Hank was a terrific planner in life. And he did a bang-up job executive producing how we managed the time right after his death. If only he could have done that for others, he’d certainly have found a great second career.

Complete Article HERE!

Volunteer comforts those near the end of life

By George Basler and Connie McKinney

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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.

“I’m here to give comfort,” she emphasized.

Complete Article HERE!

Five Steps of Advance Care Planning

Advance Care Planning is easy! There are just five steps…

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