Confusion around hospice services

Allyn Jenkins’s husband Jim was reluctant to agree to hospice care during his final hospitalization for pancreatic cancer in October 2019.  

“He remembered the church announcements about various members going into hospice and then how quickly there was a death announcement,” recalls Jenkins. 

Larry Petroff, who fought a long battle with prostate cancer over eight years, was also not prepared to turn to hospice in August of 2021 when he was still engaged in the fight. But, after he had to cancel a blood transfusion at Emory hospital in Atlanta, and instead go to the Piedmont emergency room, a nurse there advised him that, “perhaps this was the time to get hospice involved,” recalls his wife Kay, who was not allowed in the hospital at that time due to Covid. A hospital social worker confirmed for Petroff that hospice was the right decision. 

“The biggest misunderstanding is that people think it’s a death sentence,” says Matt Howell, regional director of hospice operations for St. Mary’s Hospice. “But the real goal of hospice is to keep patients at home. It’s about keeping them comfortable. We do everything we can to ease the load – hospice is a benefit, not something to be afraid of.”  

It’s these misconceptions about hospice care that often prevent families from seeking this help that could greatly improve their patient’s quality of life as well as their own. Instead, hospice is frequently delayed until the very end—even though it can provide comfort, support and sometimes even extend life.  

Medicare statistics show about half of hospice patients stay 18 days or less, often due to late referrals although the average length of stay is around 90-92 days. Patients with dementia often have longer stays, averaging around 110 days.  

As Jim Jenkins was being discharged from the hospital for what would be the last time, a social worker came to talk with him and Allyn and persuaded the family that hospice would make life easier and enhance his remaining quality of life. 

From that day on until he died on Dec. 11, “someone came in every day and checked on him and cleaned him up – I didn’t have to deal with any of that,” Jenkins says. “One of the night nurses had worked with Jim, and she would come at the drop of a hat—any hour of the night. I’m grateful we started hospice while it could still help us.” 

The hospice team 

A typical hospice team at St. Mary’s includes a case manager who oversees and coordinates care, a physician or the patient’s primary care physician, as well as a registered nurse for symptom management, a medical social worker for emotional and practical support, a chaplain for spiritual care, a certified nursing assistant for personal care, and volunteers for companionship and special projects.  

Volunteers play an important role in hospice care. Although they can’t provide hands-on  care such as feeding or medicating patients, they offer companionship and support to both patients and families. Volunteers may also assist with light household tasks, allowing caregivers to focus on more direct patient needs. 

Meredith Thomas, hospice volunteer coordinator for St. Mary’s Hospice, says building relationships is central to the program. 

“We like to place one volunteer with one patient—we don’t switch them,” she says. “We want them to develop a deep relationship with the patient and family.” 

Volunteers may talk with patients, read aloud or play music. These interactions provide social stimulation for patients and give caregivers time to handle other responsibilities. Some volunteers also help record family stories or memories. 

“These life reviews allow patients to remember their favorite things,” Thomas says. “They can have conversations that bring joy.” 

In the Athens area, the University of Georgia provides a steady stream of volunteers. Many pre-medical students seek opportunities to interact with patients. 

“They are eager to meet patients,” Thomas says. 

“It makes a huge impact just being able to talk to someone,” she says. “Even if they aren’t talking, just their presence matters.” 

Presence and education 

A hospital bed was the first thing hospice brought to the Petroff’s house and set up in the living room, allowing him to look out the window, access the television, greet friends and family and be less isolated.  

“The fact that he had a positive attitude about hospice helped,” says Kay. “I have a friend whose husband refused hospice, and it’s been extremely difficult for her.” 

“Larry actually looked forward to hospice staff coming when he couldn’t get out anymore,” she remembers. “It becomes very isolating to be at home with just you and your spouse. Most people in our neighborhood work and friends have other responsibilities.” 

Kay says the hospice staff was always pleasant and upbeat, which boosted Larry’s morale.  

It was the training provided by hospice that Kay most appreciated.  

“They knew what I needed whereas I had no idea what I needed,” Kay explains. “I had no clue what I was doing.” 

Staff taught her how to empty his catheter and put pads under the bed in case of an accident. She learned how to change his sheets without getting him out of bed; how to turn him, and how to pull him up when he slipped down into the bed.  

When Larry died on Nov. 21 around midnight, Kay called hospice and the on-call nurse called the funeral home they had selected, then came and disconnected the catheter and waited until the funeral home staff arrived. The next day, they came and removed everything.   

Serving those who serve 

Hospice care is tailored to each disease and situation, Howell explains, including the unique needs of military veterans  

Howell says veterans often do not want to talk about their traumatic memories, and sometimes they will almost relive those traumas through agitation and hallucination. In those cases, music therapy has been a proven method to offer comfort. 

“Sometimes when the meds are not getting us all there, we’ll ask what kind of music they like,” he explains. “It’s not bullet proof but often they will respond. People would be amazed at the impact music can have.” 

In addition, St. Mary’s volunteers who work with veterans are trained differently.  “Veterans want to talk to someone who’s been through what they’ve been through,” adds Thomas.   

Ken Mobley, director of veteran’s resources at Agape Hospice in Athens, implemented the national WE Honor program four years ago, which provides specialized support for hospice organizations that provide care for veterans. The program helps hospices navigate the Department of Veterans Affairs system so veterans can access all available VA resources. 

Mobley, a Navy veteran and former hospice nurse, says caring for veterans requires unique expertise. 

“When it comes to providing care for veterans, not all hospices are created equal,” he says. 

Veterans may experience PTSD or other combat-related conditions, and the benefits available to them can be complex.  

“Many families don’t know what benefits they can receive,” Mobley says. 

Agape also offers “vet-to-vet” volunteers who share military experience with patients. 

“They know how to talk the talk and walk the walk,” Mobley says.  

Choosing the right hospice 

There are around19 hospice providers serving the Athens area, with six providers located directly in Athens and others in nearby Watkinsville and Bogart. With both nonprofit and for-profit providers in the industry, families may find it difficult to choose the right organization. 

“Do your homework and choose wisely,” Mobley says. While Agape is a for-profit company, Mobley emphasizes the organization’s commitment to community service. 

“Look for a company that’s there to serve the community, not just themselves,” he says. 

Howell notes that nonprofit hospices such as St. Mary’s may be more likely to offer charity care because of their tax status, though both nonprofit and for-profit organizations can provide excellent services. 

“There are failures in hospice,” Mobley adds. “They’re all supposed to provide the same level of care, but I don’t always see that. Look at the track record and how long they’ve been in business. Read reviews.” 

Families can learn more about hospice coverage and compare providers through: Medicare.gov/Care-Compare. Search and compare hospice providers by location and quality scores. Data.CMS.gov/Provider-Data shows detailed provider information.  

A hard but necessary decision 

Choosing hospice care is never an easy decision, but families often find the support invaluable.  Jenkins says hospice allowed her husband to remain comfortable at home until the end. 

“He was never in pain, and that meant the most to me,” she says. “With him at home, people could come see him and say goodbye. Hospice didn’t just come and serve and leave. I didn’t have to worry about anything.” 

Her daughter, Celia Lozada, says hospice workers also provided emotional support. 

“I had conversations that helped me wrap my head around everything,” she says. 

After her father passed away, hospice workers helped reset the home and continued checking in during the year that followed. 

For families wondering whether hospice is the right choice, Lozada offers simple advice: “Don’t resist. It just makes your life harder. Hospice workers are angels.” 

Mobley agrees. “Family gets to be family because hospice is taking care of everything else,” he says. 

Kelly Capers is a freelance writer who lives in Oglethorpe County.