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The Business of Hospice Care
Posted On: Tuesday, 01 September 2009

September 1, 2009

As reported in the pages of In Business magazine.

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HospiceCare nurse Kristin Keir provides at-home care to William "Mac" McCullough, one of her 15 patients she has under her charge.

"You've got five percent less lung capacity from the latest test," HospiceCare, Inc. nurse Kristin Keir, 34, tells her patient, "but, here you are!"

Defying all the odds, she means.

It's a sunny, summer day, and Keir visits her patient, William "Mac" McCullough, an 80-year-old gentleman with a diagnosis of COPD (Chronic Obstructive Pulmonary Disease). In 2005, McCullough was given six months to live and his family called HospiceCare. There have been several scares since then, but McCullough keeps battling through. Keir has worked with him for the last two years, checking in on a weekly basis, in his home, the way he prefers it.

His condition meets the numeric criteria of HospiceCare, and because he's dependent on oxygen, his hospice benefits continue. But having a two-year relationship with a hospice patient is a rare occurrence.

"So, your lungs are operating at about 20% capacity," Keir tells McCullough, sitting comfortably in a corner of his long-time family home, just steps away from the Lake Mendota shoreline. With oxygen piping into his nostrils, McCullough reacts, "So I don't have much more to go, in other words?"

Keir nods. She takes his vitals. His blood pressure is 110 over 70. "Pooping and peeing okay?" she inquires. He nods. She checks his heart, lungs, and stomach. "I think you're good!" she says, packing up her stethoscope.

This is not a depressing visit. McCullough is charming, witty, and, as we quickly learn, once held a two-year post on Madison's city council. "I've been busy!" he says of his life. His memory is sharp as he recalls controversial votes he made in that capacity. "I got quite an education, and had a great time!"

With a twinkle in his eye, he chides his nurse about a long-standing joke — something about a skinny-dipping party he intends to throw. They banter back and forth playfully. "I'd love to have another cigarette," he suddenly announces, knowing full well those days are behind him.

Within arm's reach are nebulizers McCullough uses to aid his breathing. As Keir checks the apparatus, the patient's mischievous side reappears. With laughing eyes, he jokes about lighting and passing the nebulizer tube around like a marijuana cigarette. Asked how he would know about such things, he just grins, "I've seen it on TV!" he insists. The room brightens.

"Kristin's a good gal," McCullough says. "She takes her job seriously." Keir stays for another half hour as we all learn a bit more about McCullough's life. For those few moments, it's hard to imagine the fate that awaits this proud man and his loving family. McCullough's daughter Sherry, visiting from Colorado, is also present this day. Her mother Betty, McCullough's wife of 56 years, is asleep upstairs.

Keir is one of 134 registered nurses employed by Dane County's HospiceCare, Inc. It is a salaried job she calls her "soul-work." Prior to joining HospiceCare, Keir was an OB/GYN nurse for a multi-disciplined physicians practice. "When I saw the ad for Hospice, something kicked in," she said, admitting that for the first time, she's really happy. "I know that I'm in the right place."

Keir, with HospiceCare since December of 2005, admitted she felt like a novice in the beginning. "I was a pretty big sponge for the first year," she recalled, adding that her previous jobs had not required a lot of physical assessments, or critical thinking related to medication choices. The day she lost her first hospice patient, she remembers going home, standing on her porch and crying.

"I allow myself that every now and then," she said, adding that she also receives a lot of support from family and friends. "It's okay to let people see you be emotional. That's normal and natural. People say, 'Oh, it gets easier,' but I hope I'll never be that nurse that says that. I want to keep everyone special."

Keir describes her hospice duties as holistic. "[My job is to] make sure my patients are comfortable physically. I work with pharmacists, doctors, and families, of course, but part of what I do is bear witness with [my patients] and guide them spiritually and emotionally." Of the 15 patients currently under her care, she says McCullough is in the best condition. He still gets out for dinner twice a week — with the help of a 24-hour live-in assistant — to his favorite haunts: the Avenue Bar and The Esquire Club. [The family pays separately for two assistants not affiliated with HospiceCare.]

"I don't feel like a rare bird," Keir says of her job choice. "[Our patients] are the remarkable ones. They let total strangers in and allow us to help them. At the end of the day, I count myself really privileged to do this work. These are precious times, and many don't have this opportunity. I help people meet some of their end-of-life goals."

The work is hard, she says, and intense sometimes. But the support system she receives from the HospiceCare staff, including other RNs, LPNs, social workers, chaplains, volunteers, and grief counselors, allows her to prioritize her days efficiently.

For the most part, each day is dictated by her patients and their families, though she also works fairly independently. "I'll call doctors to suggest what might work for my patients, and nine times out of 10, they'll just say 'do it.'"

Sometimes, she admits, there is some pushback from physicians who might lack end-of-life experience. Then there are the days where she wishes she could be in five homes at the same time. "I'm thankful I have a backup RN and LPN," she said. On-call backup is available around the clock.

Most important, Keir said, is the ability to always focus on the present and the patient in front of her. That, she says, "is really, really important. There are times when [being in the present] is tough to do if there are a million things going on."

One of Keir's biggest frustrations is that people in the end-of-life stage aren't sent to hospice sooner. "It's never too soon," she insists. Indeed, 50% of those served by HospiceCare are admitted just two weeks prior to death. "That's upsetting when you realize what those patients are missing out on," she says, citing satisfaction surveys that show the top regret of families is that they didn't call hospice sooner. "When patients come in within the last few weeks, days, or hours of death, that's such a short period of time for us to help them emotionally and spiritually for their journey."

And when that final moment arrives, Keir says her role often involves watching how the families react, answering questions they may have, offering pointers on keeping patients comfortable, and observing and translating a patient's verbal or nonverbal communications at life's end.

"If I'm not there, I'm on the phone with the family every day." It all comes back to the patient's individualized plan of care.

Keir says the rewards she gains from her job far outweigh the difficult moments. "I learn so much from my patients," she says. "In the end, I feel like I'm a better clinician. I've inevitably learned a new skill, task, or about a new medication, and often feel like I'm a better person. I've heard husbands and wives interact during their last moments, and it's changed my life. It's easier for me not to get caught up in my own rat race."

Her biggest honor, she says, are the connections she makes with patients and their families; the ability to become "a tiny insider into their lives, helping them meet goals, and watching people die comfortably, when they feared they couldn't." If a patient requests a special dinner, HospiceCare will try everything to provide it. "One person wanted to see the ocean," she said, "so we'll find different ways to bring the ocean to them."

In 2008, approximately 37% of HospiceCare patients had cancer, while 63% had a combination of heart, lung, and kidney disease, ALS, AIDS, or Alzheimer's disease. Patients ranged in age from two days to 107 years. On this day, the nonprofit is serving 630 patients, with just a fraction receiving in-patient care at the HospiceCare facility.

Back in the McCullough household, "Mac's" son Clint has walked in. Sherry and Clint are two of four McCullough children. They speak about the peace of mind they feel, knowing their father is well cared for.

"They are all saints," said Clint, of all his father's helpers. "I don't know how we'd do this without them. They are underpaid and overworked. Hospice braces you for what's coming in an open, gentle way. They're there for you and offer reinforcement."

Unable to avoid the elephant in the room, I ask McCullough what it's like knowing his days are numbered? He shrugs matter-of-factly. "I'm gonna die sometime, why worry about it?"

And that is the day's teaching moment.

 
HospiceCare Inc.: A Model For Health Care Reform
Posted On: Wednesday, 19 August 2009
By Richard E. Riselbach & Susan Phillips
Wednesday, Aug. 19, 2009
The health care reform debate has focused on two seemingly opposing factors-cost and quality-in striving to achieve cost-effective delivery of high quality care. But are they really opposing factors?

A study by the Dartmouth Institute for Health Policy showed that $750 billion is spent each year on health-related services that don’t necessarily help patients get better. Reduction of this unnecessary expense could free up money for comprehensive health insurance coverage for virtually all Americans. However, skeptics doubt whether such savings can be achieved without limiting quality of care.

Important in the debates are examples of care systems with documented cost savings that do not compromise quality. HospiceCare Inc. is a leading example. Rock County is served by this multidisciplinary, physician-led philosophy of team care that is most often provided in the patient’s home. HospiceCare Inc. cares for more than 650 patients per day who have life expectancies of six months or less. More than 30 percent of all Rock County deaths are cared for by HospiceCare. Hospice patients are spared the pain and expense of spending their last days of life in an intensive care unit.

Staggering costs can result from attempts to extend life through unnecessary hospitalizations and emergency room visits. Average costs for nonsurgical intensive-care unit stays range from $3,000 to 4,000 per day. Hospice costs considerably less.

Instead of fee-for-service, hospices are reimbursed on a daily rate-about $130 per day for routine home care. Hospice saves Medicare more than $2,300 per patient, which results in more than $2 billion savings per year, according to the Duke study.

The cost savings are even more impressive considering the documented high quality of hospice care. In 2007, the Journal of Pain and Symptom Management reported that in patients with life-limiting conditions, hospice patients live 29 days longer than nonhospice patients. Locally, up to 13 percent of HospiceCare patients are discharged each year because quality care results in them no longer being expected to die within six months.

Hospice is available to all patients with life-limiting conditions and life-expectancies of six months or less. HospiceCare provides care to all, regardless of age, health or social status. Services are offered on a sliding scale for patients who do not qualify for Medicare, Medicaid or do not have insurance coverage.

If more patients document their wishes, they can avoid futile therapy and greater savings can be achieved as well as a higher quality of life. Thus, the potential exists for even greater savings through use of the HospiceCare model.

HospiceCare Inc. provides tangible evidence that cost and quality are not necessarily opposing factors in health care reform. Their model of multidisciplinary teams, led by physicians, with electronically facilitated coordination of care and innovative reimbursement, needs to be expanded and applied throughout our health care system to achieve cost-effective delivery of high quality care-an attainable goal of reform proposals.

Health and health policy Richard E. Rieselbach is a professor emeritus at the UW School of Medicine and Public consultant to the Wisconsin Medical Society. E-mail rer@medicine.wisc.edu. Susan Phillips is president and chief executive officer of HospiceCare Inc. E-mail Susan.Phillips@hospicecareinc.com.

 

As published in the Janesville Gazette: http://www.GazetteXtra.com/news/2009/aug/19/health-cost-control-quality-care-look-hospice-mode/

 
Hospice Benefits Can Provide Spiritual, Emotional and Financial Relief
Posted On: Tuesday, 04 August 2009

Executive Insight: Hospice Benefits Available to Everyone

August 4, 2009

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“My whole job is really about doing whatever it takes to make people comfortable, to have a better quality of life,” says social worker Ingrid Revie-Marshall, pictured here with patient Ruth Gordon. “People appreciate that.”
For years, you dreamed of owning your own business. You've been a successful entrepreneur for several years, building what you hoped would be a recession-proof company from the ground up, meeting your payroll with little problem, and even having a little something to give back.

Now that dreaded recession is here, and it's a doozey. Credit is tight, business customers are paying later and later, and new customers are hard to come by. You've had to lay off employees, including some who really added value, and the stress of avoiding more agonizing job cuts is mounting by the day.

You wonder: What could be worse? That is...until you get a devastating phone call. Your mother has less than six months to live.

Now you've got to run a business and provide end-of-life care, and for a brief moment you allow one self-centered thought to cross your mind — what about the personal cost?

At that moment, business considerations may not carry the weight they once did, but there is no need to feel helpless as you gird yourself to help your family. Far too many people initially fail to realize that hospice, or end-of-life care, is available to everyone.

"What often happens is that people don't think they or their loved ones are eligible to receive this benefit, but in fact they are," said Dan Chin, director of public affairs for HospiceCare, Inc. "Or when they call, they learn when they will be [eligible], and that's really important because the number one concern on our patient satisfaction surveys is that they wish they had heard of our services sooner because it was such a huge benefit, spiritually, emotionally, but also financially."

Typical Caregiver
Business executives are among those who assume the role of chief family caregiver. The typical caregiver is a woman, age 46, who is employed full-time. More broadly, about 40% of adults are doing some kind of caregiving for their parents, and almost half are employed full time. In many cases, they aren't getting any younger themselves — the first of 76 million baby boomers started turning 60 in 2006.

For the patient to be eligible for hospice care, a physician must officially certify that the patient has a life-limiting illness and has only six months to live. For anyone that suddenly find themselves caring for a parent in an end-of-life situation, their first move is to work with their primary physician, and work with the physician of the individual you are caring for, "to understand the nature of the condition," said Pam Peterson, vice president of employee and volunteer services for HospiceCare.

HospiceCare provides teams of caregivers for each patient, teams comprised of everything from a grief counselor to a pharmacist. In all, there are about a dozen people, including the attending physician, involved in the care if you don't count the family member and the patient. They complete the required circle of care with the patients directing things from the center.

"Our teams are set up by physical location — a north team, a west team, and a south team — and so depending on where the patient lives, we assign them a specific, targeted team," Peterson said. "Our missions group goes in and they assess the initial needs of the patient, and then they are assigned a team, and then the team assigns the care group."

The typical HospiceCare patient remains in the home, as do 96% of Americans in an end-of-life situation. Members of the care team go out individually to the home based upon the needs of a patient who wants to be at home surrounded by their loved ones in their comfortable surroundings.

There are times in a patient's condition, as they approach the end of life, when their symptoms require a medical-coded environment, so the patient would come to HospiceCare's Fitchburg facility to get their symptoms managed with the goal of returning back home. Such acute-care situations typically last three to five days.

HospiceCare also has patients who come in for five-day stays for respite care, but that's typically to give the caregiver a break.

Medicare and Medicaid take most of the worry out of financial considerations. Hospice care is the most comprehensive Medicare benefit, and the Medicaid hospice benefit mirrors the Medicare program. Most private insurance plans have a hospice benefit, though it is not as comprehensive as Medicare, which pays for everything care related.

Patients who reside there full-time pay $270 a day for that service, which is comparable to other local long-term facilities. Medicare — just as it wouldn't pay someone's rent or mortgage — won't pay for hospice room and board. In their pre-planning, some individuals will purchase long-term care insurance to cover the cost of hospice residency.

As far as the length of the relationship, it varies. "We do have some patients who are with us for five or six years and continue to qualify for the services," Chin said. "However, more than half of our patients are with us for two weeks or less."

Emotional Wear
It's difficult to quantify the emotional impact that caregivers face, but the best advice is to be prepared for a variety of emotions. The emotional stress can cause increased blood pressure, a weakened immune system, and mental health issues like depression.

"An individual will experience a wide range of emotions, even as far as getting depressed because they are facing the fact that a loved one is facing the end of life," Peterson said. "So in addition to dealing with that emotionally, they are also dealing with the emotions of the person they are caretaking for, and facing that. If there are children involved, they are dealing with that.

"So the caretaker tends to take on a lot of that emotional support, and they may not always support themselves emotionally."

One of the benefits of hospice care resources is that they can prevent the health issues, including depression, that might otherwise develop. HospiceCare has grief support groups, for caregivers and their families, which meet at the Fitchburg facility and out in the community.

The key, however, is the constant communication that occurs throughout the caregiving process. "Usually, when people are in those bad emotional states, it's when they don't know what's going on with the care," Chin noted, "and so throughout the care, there is a lot of talking. There is talking with the nurse or social worker, talking about what's going on, helping people to know what's going to happen, answering their spiritual questions, maybe repairing relationships within the family, and getting everyone ready for what's about to happen. That knowledge really settles people."

Employers Invest in Long-Term Care, Too
The Madison business community has been instrumental in the development of HospiceCare. The two buildings on the HospiceCare campus, the Don and Marilyn Anderson and Peter and Ellen Johnson buildings, were contributed by business executives whose families had used hospice. Marilyn Anderson, who passed away last year, received cared there.

Often in a hospice situation, employers must replace caregivers because they get 12 weeks of leave to care for a dying loved one under the Family and Medical Leave Act. In many cases, it's unpaid leave.

For those who remain on the job, employers can do a great deal to alleviate the health impact their employees feel just by knowing the warning signs. They include exhaustion, irritability, and a lack of concentration. Many organizations, as part of their benefits packages, offer employees flex time where they agree to compress the work week if an employee has to travel to see a dying parent.

Businesses also can get involved in the volunteer arena. About 30 Greater Madison businesses take part in HospiceCare's Corporate Ambassador program, including the likes of American Family Insurance, Midwest Family Broadcasting, and Smart Motors.

J.R. Smart, president and CEO of Smart Motors, said his late father, Jim Smart, convinced his fellow Madison-area car dealers to partner with HospiceCare through the annual donation of a car. The car is raffled off in a campaign that has raised more than $500,000 for hospice over the past 10 years.

Ironically, Jim Smart spent the last evening of his life with the organization he admired so much, passing away at HospiceCare's Fitchburg facility in December of 2006. "Our family was around him at the time, and we just admired so much and appreciated the great care and time that the staff gave to us and offered up for his end-of-life experience," said J.R. Smart.

According to Chin, business support for hospice care usually filters down from the top. "Typically, it starts with someone at the executive level who has received care from us who now fully understands the benefit of hospice care and how it can help everyone," Chin said, "and that gets their senior leadership team behind it. Then the [business] organization really gets our organization involved with their employees as an added resource through human resources, or just educational opportunities, or even fun events for the staff."

Volunteers are part of every care team, and HospiceCare has about 950 volunteers in all. They are needed to take someone out for a car ride for ice cream, play cards with the patient, or help with house cleaning or lawn duties. HospiceCare employees, themselves, volunteer by making Thanksgiving and Christmas dinners and then delivering them to patients.

To educate the business community about the impact of care-giving on employees, HospiceCare recently conducted a four-part series for area employers. More than 50 people attended — enough to considering doing it again, Peterson said. Individual employers have talked to HospiceCare about coming in and doing the four-part series at their respective companies, "like a lunch and learn," Peterson said. "We're starting to have some of those conversations."

As published on IBMadison.com: http://www.ibmadison.com/healthcare?id=181

 
Hospicecare Grants Final Wedding Wish
Posted On: Sunday, 22 March 2009

Wisconsin State Journal :: LIVING WELL :: H1

Sunday, March 22, 2009
By SANDRA KALLIO This e-mail address is being protected from spambots. You need JavaScript enabled to view it 608-252-6181

latonya-joe-rollinsThe bride wore Nike.

She had a veil, too, thanks to Latonya and Joe Rollins' last-minute wedding planners, nurse Marcy Gathy and social worker Betty Glanzer of HospiceCare Inc.

Latonya, 31, and Joe, 38, had previously purchased wedding rings in anticipation of their marriage, but, she says, "Everything kept getting in our way."

"Everything" included Joe's failing health - the reason the couple contacted HospiceCare for help in December 2008, several years after he had been diagnosed with Hodgkin's disease.

Eager to help Joe reach his remaining goals, the HospiceCare team arranged for a home visit by Dane County Clerk Robert Ohlsen and paid the $100 marriage license fee. That was a big step in the wedding direction, but Joe's cancer tripped up plans for a ceremony at their Madison home.

Two weeks later, while an inpatient at the Anderson HospiceCare Center in Fitchburg, Joe proposed a wedding that very day to Latonya.

Within hours on Jan. 22, the staff had reserved the center's chapel and HospiceCare chaplain Bob Groth's time; e-mailed invitations; secured a volunteer wedding photographer; purchased a veil, cake and flowers, and arranged for the couple's 10-year-old son Shemar to serve as ring-bearer, their 9-year-old daughter Shawanda to be the flower girl and their youngest, "Little Joe," 6, to join his family at the altar after HospiceCare public affairs director Dan Chin (aka the photographer's husband) walked the bride down the aisle to the teary-eyed groom.

The ceremony was set to start when the wedding planners realized they had no music. HospiceCare volunteer coordinator Toya Robinson stepped in to sing Whitney Houston's "You Were Loved," improvising to personalize the lyrics.

Joe rallied that day, standing up from his wheelchair for the entire service and cracking jokes about the rings, then later solemnly pledging his love for Latonya "till death parts us."

After the newlyweds kissed, the groom beamed and the bride turned to the chapel full of supporters to exclaim "I'm Mrs. Rollins!" before texting the good news to distant relatives and friends.

She no longer worried about her outfit for the surprise wedding: "I felt like a bum, but then I thought about it. It ain't about the clothes. It's about who I married."

She married the love of her life, Joe Rollins, whose smile lingers in memories of those he touched. On Feb. 9, he died sitting in bed with his wife at his side.

As published in the Wisconsin State Journal

 
HospiceCare Thrift Store Sees Spike In Donations Before 2009
Posted On: Tuesday, 30 December 2008

Proceeds Benefit Terminally Ill, Families

MADISON, Wis. -- The HospiceCare Thrift Store on Madison's West Side said it is seeing a major spike in donations as people look for last-minute tax deductions before 2008 ends. The HospiceCare Thrift Store is open Wednesday from 10 a.m. to 7 p.m., and workers said they can always use women's clothing, and house wares like kitchen items. Proceeds benefit the terminally ill and their families. "People have so many connections with HospiceCare that they just want to give to us, and it all goes back to families and patients in Dane County. It's been really busy, and we really haven't had a slow donation day for a long time," said Robert Washburn, of the HospiceCare thrift store. St. Vincent DePaul and Goodwill stores also have normal drop-off hours Wednesday.

Copyright 2008 by This e-mail address is being protected from spambots. You need JavaScript enabled to view it . All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
 
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