Category: Dying Wisely and Well

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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!

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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!

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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!

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In the last months or days, these treatments can make things worse

By Tammy Worth

doctor and cancer

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 the woman, 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.

Sharon Kaufman, author of “Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line,” said this is another area where the default treatment may not be the best option for older patients.

“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.”

Complete Article HERE!

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Contending With The Specter Of Death, 140 Characters At A Time

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Paul McLean: "So often Kate Granger’s tale of dying has become one of living, which may be her greatest gift."
Paul McLean: “So often Kate Granger’s tale of dying has become one of living, which may be her greatest gift.”

“Forget funeral selfies. What are the ethics of tweeting a terminal illness?”
— Headline in The Guardian, Jan. 7, 2014

I did not expect to still be writing about Kate Granger in the present tense. I thought she would be dead by now. If that sounds unfeeling, well, she thought she’d be dead, too. She said so in an email, and on Twitter. Many times.

Dr. Granger — “call me Kate” — was diagnosed with an aggressive sarcoma nearly five years ago. She began telling her story on Twitter in March 2012, to a smallish following. A while before the writer Emma Gilbey Keller and her husband, former New York Times editor Bill Keller, came under fire for stories questioning another terminal cancer patient’s use of Twitter to tell her story, Kate’s mortal tale had found a growing audience. Its present count: 42.3K.

Kate didn’t post for nearly a week after writing, “feeling very down after this morning’s clinic visit. Just feel there is no hope for me anymore.” A chill ran down approximately 42.3K spines.

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But not one of them really knows what to think. Following @GrangerKate has been a roller coaster ride and an emotional bait and switch. So often Kate’s tale of dying has become one of living, which may be her greatest gift. She is a marvel of revelation and self-motivation, and no small part of that has been her passion for being a medical doctor.

She wants to care for suffering humans. It is a profound calling. Her specialties are elder and palliative care, finding ways to somehow lessen the suffering. All while sharing her own.

Around the time Kate started telling her story on Twitter, the American physician Ken Murray published an influential essay about the difference in ways of dying between physicians and patients. More than their patients, Murray wrote, doctors know when to say when.

This seemed true of Kate. “Never again,” she would write in a letter to chemo. But then she’d change her mind. This happened more 005than once.

A newlywed when diagnosed, Kate wanted more time with her husband. A newly minted doctor, she wanted more time with patients. Another round of chemo allowed her meet the queen, to write another book, to hold her niece for the first time. She launched a national movement in England, a product less of her training as a physician than her experience as a patient.

Being a patient gave her a view she preferred not to have into an impersonal side of her profession, with rounding teams of doctors and medical students gathering at the bed of a person defined by a set of symptoms. This inspired Kate’s #hellomynameis name tag that has become something of a phenomenon throughout the National Health Service and elsewhere in the U.K.

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Scan the hashtag, or @PointonChris, the Twitter handle for Kate’s husband, Chris Pointon, and be amazed at the photos of who has adopted #Hellomynameis — pop stars Kylie Minogue and Peter Andre, Virgin founder and entrepreneur Richard Branson and British Prime Minister David Cameron, to name a few.

“I think you are right about productivity at the end of life,” Kate wrote in an email to me earlier this year. “I don’t have tomorrow so I have to do things today. When I’m having a bad day, then I tend to just push myself into action. I guess it all comes back to legacy for me. I want to make my mark on healthcare.

“Because of my illness, that is not going to be through a long, distinguished academic and clinical career; but it could be through improvement of culture and how we view patients now with the #hellomynameis campaign.”

The chemo ride consists of hopeful peaks and toxic depths, and more hopeful peaks if you’re lucky. Kate and her husband agreed that 004six months of good quality of life would be “worth it for suffering the distress of chemo,” as she put it in an email.

“I know full well there will come a time when we won’t achieve the six months good time (chemo is becoming less and less effective with each course) and my baseline fitness will be declining,” Kate wrote to me.

“Making a choice not to have treatment in that setting will obviously be very difficult, but I think because we have been open, honest and logical about it, hopefully it will be easier to communicate our choices to family and friends.”

To all 42.3K of them, in 140 characters or fewer.

Complete Article HERE!

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After her own tragic loss, WGN-TV reporter wants death to be a dinner discussion

randi-belisomo
WGN-TV reporter Randi Belisomo will host a “death over dinner” event at Barba Yianni Greek restaurant in Lincoln Square, where people can gather to ask questions and swap stories about approaching their final days.

By Heidi Stevens

If the two certainties in life are death and taxes, a close third is that no one wants to discuss either of them over dinner.

WGN-TV reporter Randi Belisomo is trying to change that — the death part, anyway.

Her husband, Chicago journalist Carlos Hernandez Gomez, died from colon cancer in 2010, and although the couple knew Hernandez Gomez’s cancer was incurable, they never discussed what to do if he had to be put on life support. When faced with that reality, Belisomo struggled to make the right decision.

She has spent the years since his death encouraging people to discuss end-of-life decisions while their loved ones are still alive and lucid. Along with Northwestern Memorial Hospital oncologist Mary Mulcahy, who treated Belisomo’s husband, she launched Life Matters Media, an initiative that offers resources and information to approach dying with dignity and a strategy.

“We come to this from a point of failure,” Belisomo told me. “Death was the elephant in the room that was never addressed, and it left me just shocked. I don’t regret any decisions that were made, but it would have been so much easier if we heard from him what he really wanted.”

On Saturday night, Belisomo will host a “death over dinner” event at Barba Yianni Greek restaurant in Lincoln Square, where people can gather to ask questions and swap stories about approaching their final days.

If you knew you were going to die in a month, what would you do? How can you plan ahead, so you can be present and surrounded by your loved ones when you’re dying? How do you want your life to end?

“End-of-life has become so medicated and such a series of interventions,” Belisomo said. “We talk about what’s the ideal scenario and how to support the wishes of those that you care about.”

The dinner series is part of a national effort spearheaded by The Conversation Project andDeath Over Dinner, two nonprofits made up of wellness and medical experts who guide people toward end-of-life discussions.

“Everyone is reluctant to start the conversation,” said Ellen Goodman, the Pulitzer Prize-winning journalist who co-founded The Conversation Project. “Middle-age children may be reluctant to have the conversation with their parents because they don’t want to suggest their parents are going to die. Elderly parents may be reluctant because they don’t want to worry their children.”

The conversations, though, become a gift — to both parties, she said. The person dying knows his or her wishes have been heard and will be respected. The survivors know what their loved one wanted and didn’t want.

And yet:

“There are these dynamics of reluctance,” Goodman said. “Because you’re letting death in the room.”

She experienced it firsthand, and she meets countless others who have too — from all generations and age ranges.

“My mom and I were people who talked about everything, except one thing: how she wanted to live at the end of her life,” Goodman said. “What I found to be true is when I tell people that, half a beat passes, and out pours a similar story.”

Some of those stories will be shared Saturday, when Belisomo will help her fellow diners honor loved ones they’ve lost and talk about their own wishes. This will be her fourth such event.

“People come alone who just want to explore the topic and learn how to talk about it in their own family,” she said. “We have couples who come. People talk about their own experiences. I hear these stories over and over again, and it’s not going away.

“The fact is we’re going to have to make decisions on other people’s behalf,” she continued. “And that’s a heck of a lot easier if you know the values and goals of that person.”

Complete Article HERE!