Recently, Paul “Jack” Papin greeted his Hospice of Dubuque nurse and social worker by making a funny face out the window.
The 82-year-old Dubuque resident said he likes to joke with his primary nurse, Kristin Schroeder, when she stops by multiple times each week to check his vitals and see how he feels.
While she has questions she needs to ask to assess his health, they also chitchat about their families, Papin’s home projects and other day-to-day topics.
They have gotten close over the past eight months of his care.
“Kristin’s almost like family,” Papin said.
Hospice of Dubuque serves more than 55 percent of people who die in Dubuque County. Executive Director Lavonne Noel said stories such as Papin’s show how hospice care can help people comfortably enjoy the final stage of their lives.
“We want to help people live and live well,” she said.
Area hospice providers have had an increase in demand for their services in recent years, but they see an even larger surge on the horizon, as the baby boomer generation ages.
Projections estimate that there will be 60 million living baby boomers in 2030 — all of whom will be at least 65 years old. The Centers for Disease Control and Prevention states the increased senior population will lead to an increase in people with chronic diseases, such as cancer, diabetes, arthritis and Alzheimer’s disease.
Area providers are planning ahead to make sure they can handle that rise in need, the Telegraph Herald reported.
“I think the biggest thing for agencies to survive is to be adaptable,” said Laura Lane, director of Crossing Rivers Health Hospice in Prairie du Chien, Wisconsin.
Hospice care specializes in managing pain and discomfort for people who are terminally ill.
People are referred by medical professionals, who affirm a patient likely has six months or less to live. After people are accepted, hospice providers develop plans of care for patients, including medications, which will help them feel more comfortable as their illnesses progress. In hospice, patients are no longer pursuing curative treatment.
The most recent data from the National Hospice and Palliative Care Organization states there are more than 4,300 Medicare-certified hospices in the U.S. Medicare paid $16.9 billion for hospice care in 2016, and about 95 percent of those patients were at least 65 years old.
The most common principal diagnoses for those patients were cancer, cardiac issues, dementia, respiratory issues and stroke, according to NHPCO.
Hospice of Dubuque serves those in the city and also covers an about-30-mile radius outside of it. It served 797 patients last fiscal year, which ended Oct. 31. The organization served 865 patients the prior fiscal year and 755 in the year before that.
Crossing Rivers Health Hospice averages about 100 patients per year, as it serves people in Crawford and Grant counties in Wisconsin, and Allamakee and Clayton counties in Iowa.
FHN Hospice, of Freeport, Illinois, covers Jo Daviess County and four other counties. Director Cari Johnson said it has grown slowly in the past few years, with about 300 admissions in 2018.
Hospice of Jackson County serves its namesake county and portions of five others. Director Teresa Myers said the organization averages 22 to 25 patients in its daily census, though it has been as high as 30.
“A few years back, it was between 9 and 12 patients (for the daily census), and 15 to 18 was a high number,” she said.
All four agencies are nonprofit entities, with patients’ costs either covered through Medicare, Medicaid or private insurance. Noel said if a person does not have insurance, the government requires that providers apply a sliding fee scale based on ability to pay.
Johnson and Lane said they’re unaware of any instance at their respective agencies in which a patient didn’t have some form of insurance to cover care.
“We have financial advocates to assist patients with knowing what their co-pays or bills may include, and this is available prior to services being provided if requested,” Johnson said.
Noel and Myers said their respective agencies will absorb the costs of those who can’t pay.
Amy Koeller, nursing services director for Hospice of Dubuque, said intake staff members meet with patients to talk about what the agency offers, address concerns and figure out goals for care.
Staff members then develop a plan of care for that patient, making available services that include a 24-hour hotline that can be called in case of an acute incident. Nurses are on call to speak with patients and respond as needed.
“We become their 911,” she said.
In addition to the medical side, hospice care includes social workers that offer additional support to patients and their families.
Lane said social workers play a key role in guiding patients and families through intimidating tasks such as setting up a power of attorney, funeral planning and figuring out insurance coverage.
“It’s almost like a laundry list of things they need help to get in place before they are no longer able to make those decisions,” she said.
Papin entered Hospice of Dubuque’s care after he was hospitalized on June 3 — his 40th wedding anniversary — due to complications related to heart failure. Based on a physician’s recommendation, he and his wife, Nancy, made the decision for him to start hospice right away.
Both were apprehensive about what it would be like to be in hospice care since it’s the “last step” for someone who is ill. However, they were glad they made that decision right away.
“I can’t brag about them enough,” Papin said.
Papin receives a nurse visit three times per week, usually from Schroeder. His social worker, Alicia Zaccaro, is generally there once a week. He does his best to give Schroeder and Zaccaro a good laugh during each visit.
“He always has a great sense of humor,” Schroeder said.
Schroeder’s duties in caring for Papin include checking his vital signs, taking blood samples, managing his medications and writing down notes from the checkup for Nancy.
“I call it my love note,” Schroeder said jokingly.
She also keeps tabs on what Papin reports regarding his pain, energy level and appetite, and if there are issues, they talk about how to address those.
Papin said he likes how Schroeder is straightforward in explaining his condition and what she is doing.
“She doesn’t pull any punches,” he said.
Schroeder said she likes to use home-repair terms when explaining Papin’s body systems to him. She also makes use of Papin’s construction background when asking about her own home repair projects or vehicle trouble.
Papin still likes to tackle projects around his house, though he knows he has less energy for them. Schroeder will remind him not to exert himself too much due to his heart condition. While he thinks he can anticipate dizzy spells, she said, “things can change in a moment.”
Nancy said that, from a caregiver perspective, she feels more peace of mind with her husband being in Hospice of Dubuque’s care. She still works a full-time job, so having a nurse regularly check on her husband comforts her.
She also said her husband can talk about his health and concerns more openly with Schroeder than with her because he is afraid of worrying his wife.
“He can talk to (Schroeder) about things that, I think in some ways, he wants to protect me from. That’s the way he is,” Nancy Papin said. “It’s a great stress reliever, knowing that he’s talking to somebody.”
Nancy said she has been pleased with how well her husband has felt while in hospice care, as he still has been able to make road trips to see family members, go out for his morning coffee with friends and do projects around the house. She also sees how much her husband looks forward to the visits.
She said the experience has changed her perception of what hospice could do.
“I could see the improvement in his outlook and the medications were doing what they were supposed to be doing,” she said. “Then, I came to realize (hospice) is about quality of life.”
While Jack Papin has been in Hospice of Dubuque’s care for months, that isn’t a very common occurrence.
NHPCO reports that, in 2016, about 54 percent of Medicare hospice patients were in hospice care for 30 days or less. Noel said many Hospice of Dubuque patients are enrolled for two weeks or less before death.
Area hospice leaders all agreed that it is an ongoing challenge to get patients into their care before their health deteriorates to a crisis point.
The four agencies offer a range of therapy, personal care and respite options to assist patients and caregivers. However, if patients are only in their care for days, they don’t have the chance to take advantage of those.
“With these short stays, we can’t have the impact that we could,” Noel said.
Part of the issue is physicians not referring patients right away, but another component is the reluctance of patients and families to transition to end-of-life care.
“I think, unfortunately, part of why it happens is that hospice still has this black cloud over it, a negative connotation that it’s a death sentence,” Lane said.
The four hospices continue to work on raising awareness of what they can do and overcoming people’s fears, including sharing testimonials from patients and families about that care.
“Word of mouth is very powerful,” Johnson said.
Staffing also can be an issue. Like other health care providers, hospice agencies are competing for a limited number of nurses.
Johnson and Lane agreed that, based on the responsibilities of the job, hospice nurses should have at least a few years of experience, as opposed to being new graduates.
“It’s very independent nursing,” Johnson said. “You’re basically out on your own managing cases.”
Another issue with hiring can be apprehension about the type of work: caring for people who are dying and sharing in a family’s grief.
“You get close (to them) if you’re the primary nurse, watching the patient change and the family change,” Lane said. “It can be very hard for a nurse when a patient passes.”
Myers said for Hospice of Jackson County, not being able to provide health insurance presents an added challenge to hiring full-time nurses.
Still, all four hospice officials said the staff they hire generally become long-term employees. They credit the low turnover with staff members being passionate about hospice’s mission.
“The people who are here want to be here,” Noel said.
Schroeder was hired by Hospice of Dubuque in October 2016. Her first interaction with the agency actually came in 2012, when her father, David Hansel, entered hospice with bladder cancer.
She was so moved by the experience that she knew she wanted to work at Hospice of Dubuque after she graduated from nursing school and had a few years of hospital experience.
“From experiencing it, I have self-standards of how I want patients and families treated,” she said.
Schroeder said while she grieves over the patients that she gets close to, she is glad to be able to get to know and help families in a difficult time.
Noel said Hospice of Dubuque completed a strategic planning process to position the agency for future growth and needs.
Among the goals identified were increased education and training for staff, looking into new technology and strengthening partnerships with other area health care providers.
Noel said staffing levels are another consideration. The agency added a nurse practitioner, and one future consideration could be to hire a full-time medical director. Currently, Hospice of Dubuque contracts for part-time services from two physicians.
Lane said hiring a dedicated medical director is also a consideration for Crossing Rivers Health Hospice. She also said the agency’s board of directors is considering establishing a “hospice house,” which would be a short-term, inpatient facility staffed by hospice nurses.
The cost and feasibility of that still are being weighed.
“For an area our size, a hospice house would be wonderful to have, but how do you staff that when you don’t have a patient in there for weeks, then you have three patients?” she asked.
Lane and Johnson agreed that staff training for handling more complicated health problems is important, and their respective agencies’ affiliation with a hospital helps with staff support and access to training.
“I think we’re situated very well, with room to grow,” said Johnson.
As all four agencies are nonprofits, the officials said fundraising and community support are huge factors in their viability.
They agreed that they enjoy strong community support and trust and that they work hard to maintain that through public outreach and sharing their stories.
“I think we’re very blessed in this area, in the fact that we have a good relationship with the community,” Lane said. “We don’t take that for granted. We work hard on being there to provide for the people in the community we live in.”