Jen Moss took to Jody Wooton from the first moments 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 she 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 seen 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.”
“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.
CHAPTER 2: After life’s twists, a final goal: dignity, peace
Jody Wooton’s mind is made up.
“I refuse to go to a nursing home,” she says.
Jody had answered the door slowly when Jen Moss knocked. Sickness makes her mornings harder these days. Her voice now sometimes gives out in midsentence. It punches strong at first, then fails suddenly, the sound of thin air rasping through a flute.
“How are you feeling today?” Jen asks.
It is a chilly Tuesday in February. Jen settles into the couch in Jody’s Overland Park apartment across from her terminally ill heart patient.
“Better now that you’re here,” Jody says with a crescent smile. For all her defiant sass, Jody’s expression most often is one of impish cheer.
Sir Winston, her black cat, a rescue pet adopted from the vet, perches like a sphinx on the arm of her chair. The cremated remains of her chihuahua, Mia, rest in a tiny urn on a corner table.
Over the last year, Jen and Jody have formed a bond that neither anticipated — the empathetic nurse who has known pain, including the killing of her first husband, and the spunky patient facing her end with clarity.
They’ve become so close that last September, when Jody was sturdier and Jen invited her to a Kansas City Royals game, it wasn’t just a kindness for a patient; they liked each other.
“I told her, ‘We don’t have to stay for the whole game if you don’t feel up to it,’ ” Jen says.
Jody’s reply: “Oh, we’re staying for the whole game!”
It was the night the Royals shellacked the Seattle Mariners 10-4 to clinch the American League Central Division title on their way to winning the World Series.
“I love her spirit,” Jen says.
Both women keep copies of a photo: Jen behind Jody, dressed in Royals gear, smiling in their seats up and along the first-base line.
“Chest pain?” Jen asks as she continues her exam.
“Some this morning,” Jody replies.
“What’s your pain level today? Scale from 1 to 10?”
“About 3.6,” Jody replies. But it vacillates. Mornings, she’s waking dizzy and sweaty.
One day last week, the pain was so sharp she wondered if she’d live — and, in some ways, would have been fine had she not.
Jen knows: When that last moment arrives, Jody wants it to happen here — with Sir Winston and Mia, in the peace and comfort of her own home.
The chief reason Jody gave up treatment and signed up for hospice was to no longer have to deal with hospitals. “I won’t,” she says.
Nursing homes for her raised terrible connotations.
At the time her mother died in 2007 with an abdominal aortic aneurysm, she lived in a nursing home, supposedly a good one. She did not leave life peacefully. She instead was raced by ambulance to a hospital in what family members describe as “screaming pain.”
To Jody, the notion of dying in a nursing home is anathema. For her own dignity and peace, she prays her death will be quick, no bother: one final heart attack and she’s gone.
“I’m a heart patient,” Jody says. “When this happens, it’s going to happen fast. That’s one thing I’m going to look forward to. Not really the dying, but that it’s going to be over with. I am a little tired of the fight.”
But on the chance it doesn’t happen that way, a meeting has been planned in two days with Jody, one of her brothers and the hospice social worker, Crispian Paul.
Jody feels anxious.
The agenda is to come up with options in the event that Jody doesn’t die quickly but instead lingers and falls ever more sick. Right now, she manages well in her illness: shopping with neighbors, cooking, eating. She has an oxygen tank, hydrocodone for pain, a prescription for nausea and low-level liquid morphine, also for pain and shortness of breath.
She gets around in her wheelchair.
“I have my house cleaned once a month. Other than that,” Jody says proudly, “I care for it.”
But she also lives as a widow on her own.
Hospice provides a lot of care, but not every hour of every day. At this point with Jody, Jen visits twice a week, on Tuesday and Friday, for an hour at a time, with the plan to increase visits as end of life approaches.
Bath aide Suzanne Fuller, who also has grown close to Jody, comes twice a week to help her care for herself.
On-call nurses can be contacted anytime in emergencies. But in general, it is only in the last few days of a patient’s life that Jen’s hospice offers “extended care,” when nurses are there many hours throughout the day, making sure they are present at the end if the family wants.
So if Jody lingers, she will need a caretaker to help. Maybe that’s a relative. Maybe it’s a nursing home.
“If I can’t get someone in here to take care of me,” Jody declares, “then we’re going to be in trouble. Because I will not go into a nursing home.”
Besides, this is where her life is.
Photographs line Jody’s walls and shelves. It’s where she shares her story:
She was born Jennie Joan Kerby in August 1951, the fifth child of seven, destined, with five brothers and one sister, to be a tomboy.
Dad was a carpenter, Mom a mom. “She was pregnant, it seemed, like every time you turned around,” Jody jokes.
All grew up in the hamlet of Bogard, Mo., population now about 160 people, some 90 miles northeast of Kansas City in Carroll County.
“Not much left there anymore,” she says.
At age 17, Jody was diagnosed with diabetes, an illness that would come to affect the vessels of her heart and even, at age 51, to rob her of the lower half of her left leg. Vessels were removed for use in a heart bypass.
“Nobody ever told me you had to watch the leg carefully,” Jody says. She wears a prosthetic. “The blood flow was compromised.”
Between 18 and now, she held jobs, nothing big or special, the longest and last for more than a decade as a medical transcriptionist. More notable were her four marriages. The last, in 1995 to Bob Wooton, was wonderful. A veteran, he and Jody shared a love of dogs. In 2009, he died one day before Valentine’s Day, after which Jody moved into Overland Towers Apartments.
“The best marriage I ever had,” she says.
But some, Jody says with candor, were not so hot.
“I always said I had a bum-meter,” she jokes, and laughs until her voice weakens.
One marriage was tragic. They had a son together. But at birth, the boy died, parts of his body deformed.
“He only lived 20 minutes,” Jody says.
Adding to her grief is that she was not conscious when he was delivered by cesarean section.
They whisked her son away. She never saw him, never held him. Worse still, Jody claims, is that while she was unconscious, the doctors told her husband it was unsafe for her to continue to have children as a diabetic. They asked his permission, but not hers, she says, to tie off her fallopian tubes.
When she woke, she discovered her boy was dead and she was sterile.
“That,” Jody says of that marriage, “was the beginning of the end.”
When she dies, Jody says, her plan is to be cremated and have her ashes mixed with Mia’s, to be spread on the graves of Bob, her son and her parents.
She knows with 100 percent certainty that she will see them again.
Source of comfort
All patients who enter hospice come with their own beliefs, or none, in God and an afterlife.
Much of providing a good death, Jen says, is in listening with understanding and without judgment.
With Jody, that has hardly been difficult.
Jen was 28, with two young children, when her first husband was shot and killed near Westport as he stepped in to protect his brother in a fight.
“When my husband passed away, I never blamed God, or was angry with God about it,” Jen says. “I’ve never had any doubts about where we go.”
Even if she possessed those doubts, she says, working in hospice would tend to banish them.
“It is a very, very common experience,” Jen says, “that once the dying process starts, that people see their loved ones coming for them.”
The medical explanation goes to changing metabolism at death and the hallucinating brain. Jen has her own thoughts.
“It comforts me,” she says, “to know that my family will be coming for me one day.”
Hospice workers also will talk of “terminal agitation” or “terminal restlessness,” in which some patients become irritable, angry, depressed or upset, sometimes thrashing about, perhaps even seeing figures from their past whom they fear. Medical and metabolic explanations are many, including infections, medications and poorly managed pain.
But the restlessness also can be psychological. It’s common among war veterans and among those who carry guilt or believe they have unfinished business.
“The best (psychological) way to explain it,” Jen says, “is that the mind and the body are not on the same page with this journey.”
Among the most common examples are parents with children they don’t want to leave.
“They are worried,” Jen says.
In hospice, counselors and clergy work, often with family, to ease the patients’ minds and emotions.
Jody’s mind is already mostly at ease.
“I’m a big believer in the afterlife,” Jody says, sharing it almost sheepishly.
“I know you’re going to think this is crazy,” she says. But throughout much of her life, she has had spiritual connections, claiming since she was a young girl to be able to see the spirits of others. She says she once saw the spirit of a young man standing near Jen.
On the day Jody’s own mother was approaching death, Jody’s sister asked her, “Do you see Dad’s spirit?”
“I see him over there,” Jody responded.
Her image of the afterlife is clear. In death and in heaven, Jody says, everyone, no matter at what age they die, is about 35 years old, even those who died in infancy. Even her own son, whom Jody insists has come to visit her.
“I can’t say I’m not afraid to die,” Jody says. “But I have my mind made up. That’s me. When I made my mind up that I was going on hospice, I was going on hospice.”
Her mind is certain she will die at home.
“I told her,” Jen would say, “ ‘You’re probably going to have a heart attack and not need a nursing facility.’ For her sake, I hope she goes to bed one night and doesn’t wake up.”
But that wasn’t to be.
CHAPTER 3: A prayer for Jody
Jen Moss nervously holds out hope.
Maybe it is a cold, or stomach bug, something treatable.
Don’t hospice patients get the flu?
After all, it was just yesterday, Tuesday, that Jen and Jody Wooton were sitting and chatting happily in Jody’s Overland Park apartment. Hospice nurse to hospice patient — the feisty and defiant Jody, with her welcoming but failing heart.
“See you Thursday,” Jen had said as she and Jody parted.
They had an appointment Thursday morning with a social worker from Kansas City Hospice & Palliative Care, plus family, to talk about future care should Jody grow gradually sicker over the coming weeks or months.
Now, early this Wednesday morning, Feb. 10, Jody has called into the office.
Jody never calls in, Jen thinks. She likes to project independence and strength.
Worried, Jen immediately returns the call.
Jody says she feels weak, nauseated. She has already vomited and has taken some medicine to help. Her chest aches. Morphine is doing nothing.
In hospice, it’s common that a patient can look sturdy for months and then suddenly crash.
Jen’s first impulse is to quickly drive to the Overland Towers Apartments, where Jody lives in Room 707. She’s conflicted.
“Part of me wants to run over there and assess her myself,” Jen says, “but I can’t.”
Boundaries: Time and again in nursing school, students are encouraged, even urged, to create them. There’s a divide between personal and professional. It’s OK to draw close and care, they’re told. Compassionate medicine blossoms from that connection.
But for emotional survival alone — especially in hospice, where the job’s end is defined by loss, echoing with family grief — work lines of separation are key.
Jen realizes that because of her affection for Jody, she has already, to some degree, crossed that line. The way hospice works, Jen today will be driving around Johnson County for appointments she has already scheduled with at least four other patients on her list of 13. She needs to send someone else to see Jody.
“Neva will come right away,” Jen assures. Neva Campbell-Lowe, a licensed practical nurse, heads out.
Making the rounds
It’s hardly unusual for Jen to grow close to her patients, at least those whom she sees for any protracted time. It’s the way they share their lives and stories that makes it so.
In the southern reaches of Olathe, Jen meets with the Dotys — Monica and her husband, Harold, and Monica’s sister, Rose Vidmar, who lives with her as her caretaker.
“How’s your pain level?” Jen asks. The four of them gather at the kitchen table.
“She had a bad night last night,” Harold reports.
Monica, 64, diagnosed with congestive heart failure, started with hospice in January. Monday, Feb. 8, marked the couple’s 31st anniversary.
“She also happens to be my best friend,” Harold says of his wife. “Up until this sickness came up, I always assumed I’d be the one who goes first.”
“There are times,” Monica says, “when we’ve leaned on each other’s shoulders and cried.”
Like Jody, Monica thought that if she were soon to die, she wanted to do it at home, with her husband and sister nearby in a place where she could sit and watch birds come and go from the feeder.
For a while, her health seemed to be slowly failing. What few anticipated in February is how fast Monica’s health would rally — so much so that by early March, her cardiologist would request that she be taken off hospice.
“She still has a weak heart,” Harold would say. “That didn’t change. But she got rid of the surrounding problems. Everything all at once kind of cleared up.”
The courses of illnesses are unpredictable. It is not unusual for patients to be in hospice, improve enough to leave the program, then deteriorate and get back in again. Harold said the hope is that perhaps his wife, down the line, could be eligible for a heart transplant.
Also in Olathe, another patient:
“A good man,” Jen says.
He’s Al Jensen, 90, with Nordic roots, tall and lean with long limbs like a sycamore tree. A Navy veteran of World War II, he was a mechanic on an LST, a tank landing ship, who also deposited crews onto the beaches of Normandy after D-Day.
His two daughters say their dad never spoke much about those days, but a faded Navy symbol permanently inked on one arm speaks to his pride. He and his late wife, Carolyn, with her riotous sense of humor, had been jitterbug freaks when they were young, 62 years married, before she died in hospice with dementia in 2010.
“They were always together. Never apart,” says daughter Gail Jensen, his caretaker. “His motto when we were kids would be ‘You have plenty of time to sleep when you’re dead.’ ”
“Even a year ago,” says Susan Johnson, his other daughter, “he was 89 and he acted like 70. He did everything. He wanted to cut down trees with power saws.”
Before he was diagnosed, Al fully believed he could live for 10 or 20 more years. Then a stomach pain brought him to the doctor. He had once had melanoma, a skin cancer; it had been caught and seemingly cured.
Doctors took an image of the membrane around his abdomen and intestines. “It looked like a bomb went off,” Gail says. “He had like 300 tumors.”
Jen comes by. Al always dresses neatly. He sits in a chair in the living room with a view of the U.S. flag raised to the top of the pole in their side yard.
“I was always shooting for 110,” Al says with a half smile. “But I’m not going to make it.”
Call to family
Soon after arriving at Jody’s, Neva calls Jen. Jody looks terrible, she says. Pale and weak. She has vomited multiple times. Neva has told Jody she should go to the Kansas City Hospice House.
Set far back from Wornall Road north of 122nd Street, the hospice house is a single-story care facility made of Kansas limestone with a peaked entryway and 32 beds. Soft piano music often plays inside, lending it the feel of a spa retreat. Except the patients are very sick, close to the end.
Ideally, the patients who come to the house would not stay there, or die there. The intention is for them to come to the house temporarily so the staff can stabilize or manage suddenly difficult symptoms like Jody’s before sending them back for care at home. But the hospice has its own chaplain, and most patients who are admitted end up spending their final days there.
“Jody doesn’t want to go,” Jen says, ending a call with Neva.
Neva offers to call Jody’s family members, some of whom live nearby — her sister-in-law, Jany, married to Jody’s youngest brother, John Kerby, a master trooper in his 29th year with the Kansas Highway Patrol.
“It’s your pain-in-the-ass sister again!” Jody has said many times when calling him. She doesn’t like bothering him.
“No,” Jody tells Neva. Don’t call John.
Neva doesn’t feel comfortable leaving Jody alone. Jody says her friend from upstairs, Karren Organ, will come down to be with her. “I’m OK. I’m just going to rest a little while.”
But when Jen calls back in the afternoon, it’s Jany Kerby who answers. Karren has called the family. Jody’s condition looks dire. She feels weak and is barely responsive.
“We’ve been here an hour and she’s not waking up,” Jen is told.
People are worried. More family members arrive. The on-call hospice nurse comes later that evening. Jen is distracted.
“Part of me is like, ‘I should go there and do it myself and admit her to hospice house myself,’ ” Jen says.
That night, she barely sleeps for worry.
Inside Jody’s apartment, a debate erupts among family about what to do, whether to take Jody to the emergency room to check her blood sugar — she is diabetic — or directly to the hospice house. They know her wishes: no more hospitals. But Jody’s blood sugar has spiked so high this night, it’s beyond measuring even after using her insulin pump. Maybe the hospital can bring it under control, the thinking goes, and Jody might have more time.
She’s transported near midnight to Overland Park Regional Medical Center, where the emergency room physician serves up the truth.
“ ‘Yes, we can treat her,’ ” John says he was told. “ ‘But it will be involved. She will end up in the ICU.’ ”
On the phone from Santa Fe, N.M., Jody’s sister, Patricia Dow, a retired nurse, speaks Jody’s mind:
“This is exactly what she did not want.”
A prayer for Jody
Jen wakes Thursday morning, checks her iPad and sees that Jody has been admitted into the care of the nurses and staff at the hospice house. For the first time in a year, Jody’s name no longer appears on Jen’s list of cases.
Instead, a new name has been added. It’s a young mom, with children, diagnosed with a cancer so aggressive that Jen will not get to know her for long.
Throughout Thursday, Jody’s family members hold out thin hope that she might rally. In her mind, Jen says a prayer:
“Dear God, let Jody find peace. Open your arms to her. Don’t let her suffer.”
Starting early in hospice, staff try to prepare families for the final days. They talk about signs and symptoms and offer pamphlets that they assume some family members read, but many probably don’t.
The material goes over information on skin color, sounds, how patients are likely to eat and drink less as death nears, how they might carry on conversations with deceased loved ones, talk of going on journeys, or simply withdraw and say little or nothing.
Among the pamphlet advice too:
“Always assume that your loved one can hear even if he or she seems unconscious and no longer communicates. Keep talking to your loved one and touch him or her if that provides comfort.”
Indeed, a hospice house has no ventilators, no resuscitation, no EKG machines or crash carts or defibrillators for saving life. Here, the medicines are the stuff of comfort — opioids like morphine for pain, anti-anxiety medications, medicines for hallucinations.
“The goal is just to be comfortable. This is comfort care type of medicine,” says David Dugan, the hospice house physician.
That care extends to family.
Jen insists that one of the most emotionally moving, even sacred, moments she has had in her two years as a hospice nurse came with a patient she barely knew. It was on a Saturday; she was simply the hospice nurse on call when a patient died.
After death, hospice nurses bathe the patient’s body. In this instance, the man’s daughter, also a nurse, requested that she and Jen do so together.
“He was going to be cremated,” Jen says. “So this was the last viewing for the whole family. It felt amazing that we got to do this wonderful thing, and that the family was so pleased. … It was very moving. It’s not every day that you get to be part of that.”
‘We will all miss you’
Jen isn’t present for Jody’s death. Family is.
Friday, Feb. 12, around 6 p.m.
Most of that day, her care, her brother says, consisted of “comfort measures” when Jody winced in discomfort.
She died as she wanted, her brother believes.
At the news of her passing, Suzanne Fuller, Jody’s bath aide, wept. Visiting the hospice house, Suzanne gave her friend a stuffed rabbit in purple, Jody’s favorite color, which Jody cradled in her arms.
Crispian Paul, the hospice social worker, wrote a playful haiku on Facebook in her honor:
I will remember/your smile, laugh and how you cursed/We will all miss you.
The following week, hospice staff would sign a sympathy card to Jody’s family.
“It was the hardest one I ever filled out,” Jen said later. “I wanted them to know how much she meant to me and made a difference in my life.”
On the last Sunday in February, Jody’s family and friends from her apartment hold a memorial for her in the entryway of the Overland Towers. Family members speak. Friends do too.
Jody’s brother, John, swears there were more people there than live in Bogard, Mo., the town where Jody grew up. At one point, John stands and asks: “Is there anyone here from hospice?”
Jen and others raise their hands. Although John has heard Jen’s name, he has never set eyes on her or others who grew so close to his sister.
“I can’t thank you enough,” he says, “for all you do.”
The next day, Jen will be back at work. On March 3, Al Jensen will pass. Again, another name will be added to her list.
Driving from appointment to appointment, she carries a few things with her. Tucked in the driver’s visor is a red paper flower from Jody’s memorial, and tucked in the passenger’s visor is the program.
Jen keeps in her memory the image of the posterboard from the memorial that included photos of family and friends and important moments from Jody’s life.
Among the photos was one of two people smiling at a Royals games, one in front of the other, Jody and Jen.
Choosing a hospice
Consumer Reports recommends this checklist:
▪ Not-for-profit status and 20 or more years of experience.
▪ Hospice-certified nurses and doctors on staff and available 24 hours a day.
▪ Palliative-care consultants who can begin care if you’re not yet ready for hospice.
▪ An inpatient unit where patients can go if symptoms can’t be managed at home.
▪ Ability to provide care in nursing homes and assisted-living residences.
Medicare approval. Most but not all hospices are Medicare/Medicaid-certified. So be careful. Medicare and Medicaid will cover services, including equipment and home health aides as needed, plus counseling and grief support for the patient and family, only if the facility is certified.
The government-run Centers for Medicare & Medicaid Services provides information in its hospice center at www.cms.gov/Center/Provider-Type/Hospice-Center.html.
The National Hospice & Palliative Care Organization offers a manual, “Choosing a Quality Hospice for You or Your Loved Ones.”