Hospice workers comfort families in loved ones' final days and beyond

Other than being Big Horn County residents, Eddie Johnson, Samantha Cook and Elsie Martens would appear to have little in common. They live in different communities — Johnson and Cook in Greybull and Martens in Lovell — and they are in different stages of their life journeys.

The one thing that unites them is grief.  All of them said goodbye to a loved one within the past year.  Johnson lost his wife Dixie Johnson on May 18, Cook her mother-in-law DeLane Cook on April 7, and Martens her dear friend Loretta Bischoff on July 8.

As difficult as they were, those tearful goodbyes could have been worse. None of these people spent their final moments in a hospital bed, hooked up to machines and in unfamiliar settings.  All died in their own home, surrounded by loved ones.

Hospice workers made it possible, stepping in to provide end-of-life care when other medical options had been exhausted. November was National Hospice and Palliative Care Month.  The hospice model is built on an interdisciplinary, team-oriented approach to treatment and support.   Hospice attends to the patient’s emotional, spiritual and social needs, and provides family services like caregiver training, respite care and bereavement support.

In 2019, 1.61 million Medicare beneficiaries living with life-limiting illness and their families received care from the nation’s hospice programs. In the Big Horn Basin, the primary provider of in-home service is Stillwater Hospice. Trace (Lowe) Bedwell, made it happen.  A native of Basin, she’s the regional director of growth and development for Stillwater, which serves Montana, northern Wyoming and western South Dakota.

“That particular area (of Wyoming) was horribly underserved,” she said.  “I had high school classmates who were reaching out, saying their mom or dad had cancer and asking if I could help them.

“I came out of retirement to work for Stillwater … and felt so proud when we opened in the Big Horn Basin in 2019.”

While hospice care is available in other communities, Stillwater is unique in that it sends nurses into homes, assisted living and nursing home facilities.

RoxAnne Arnett has become Stillwater’s point person in the Big Horn Basin, serving as a community relations representative.  She has worked as a nurse at several area hospitals, most recently in Worland and Thermopolis, and spoke of how heartbreaking it was to see patients lying in hospital beds just waiting to die.

“I saw the need for hospice firsthand,” she said.  She is now among the half dozen Stillwater hospice nurses working the Big Horn Basin, which extends south as far as Ten Sleep and Thermopolis.

Misconceptions about hospice abound, she said.  For one, hospice isn’t reserved for people who are expected to die within the next couple of weeks. “That’s just not the case,” she said. “We’ve had people on it for almost two years.

“We do have to show things on our end, proving they still qualify, but as long as the patient is no longer seeking treatment, wants to be home, have some quality of life and not have to deal with hospitals and doctors, we are the best option.”

Another misconception is that Stillwater takes away a person’s medication. “A lot of people think (entering into hospice) means you won’t be able to take your meds anymore, but that’s simply not true.  Over the course of your stay, we may decide to discuss some medications, based upon the patient’s condition at the time.  But people can continue taking their medications — it’s just a question of whether hospice pays or whether it’s paid through their current means of getting medical prescriptions.

“People also think we come in and take over, but we don’t,” she said, addressing another misconception.  “We want it to be patient-led and family-led care … and try to respect their wishes in what they want to do, without restrictions. We want the person to be as happy as they can be.”

Arnett said hospice services are 100 percent cost-free to the patient and his or her family as a Medicare or Medicaid benefit.  “We deal mainly with Medicare, but have had people under the age who qualify under Medicaid too … and we work with private insurance companies like Blue Cross Blue Shield, United and Aetna, all of which cover hospice services as well.”

Arnett said she is typically the one who make the initial visit with the patient and his or her family members.  At that time, she explains what hospice is and what it isn’t and how Stillwater can assist in developing an individual care plan for each patient.

Once consent forms are signed, nurses go into the home and do a physical admission and assessment. Stillwater employs six nurses who serve the entire Big Horn Basin. While they are only required to make a nursing visit once every two weeks, oftentimes they go above and beyond, in some cases visiting patients every day. 

“We aren’t able to do 24-hour care in the home,” she said. “Our visits last one to two hours, depending upon need, but we work with local senior centers to see if there’s an availability of caregivers and we’ve worked with private caregiving agencies throughout the Big Horn Basin.”

Arnett also emphasized that hospice care doesn’t end when the patient dies. 

“The only phone call a family has to make is to us,” she said. “We send a nurse to the family’s home, pronounce the death, call the funeral home and wait until they get there and the body is removed.  We sit with the families as long as they need and have a bereavement program that follows them for 13 months.

“It gets them through all the firsts — first holidays, first birthdays, first anniversary of their deaths.  We help families through all of that, doing it through letters, cards, phone calls and putting them in touch with  bereavement groups that we have going on at senior centers in the Big Horn Basin.”

Hospice work is by no means an easy way of earning a buck. Arnett acknowledged as much, admitting that “some days are definitely better than others.” But for her, it’s a calling.

“I tell myself, ‘If you weren’t helping these families and that patient, what would they have and where would they be?’” she said. “I know the kind of care we provide at the end of life provides that patient with a comfortable, pain-free death and family support they need, which means a lot to all of us.”

Johnson, Cook, Martens and countless others in the Big Horn Basin came away from their difficult times singing the praises of Stillwater.

Dixie Johnson dealt with Alzheimer’s in her final years.  She had been hospitalized and wasn’t expected to live much longer.  The family knew the end was near, but believed she’d be better off and possibly even improve if she was in her home, rather than in the hospital.

Eddie detailed the tender, loving care that Stillwater nurses provided to his wife, guidance offered to the family about the course of the terrible disease, the counseling that the family didn’t think it would need but ultimately did and the respite care that allowed him, as primary caregiver, to get breaks away from the home.

“Concern for the family as well as the patient was demonstrated every time someone from Stillwater visited the home,” he said.

Summing up, he said, “I wish I could name all the very important ‘angels’ that came into our lives.  The comfort and care that was provided is something that will be with me the rest of my life and our children’s lives.”

Martens was at Bischoff’s side when she passed. 

“I don’t know what I would have done without their help,” she said. “They were there for us every week or even more often if we needed them. 

“Each and every one of the ladies were such loving, kind and caring people.”

Cook said her mother-in-law, DeLane Cook, was diagnosed with kidney failure in November of 2021.

“She needed dialysis, which would have required her to travel to Cody three or four times a week — and once she got there, it would not have been a fast process,” she said. “She made the decision, saying, ‘I’m just going to live out my life. I’m done with doctors.  Done with it all.’  We all respected her decision.”

At the time, DeLane was given six months to a year. Sam said DeLane was very thankful when informed that she’d be able to spend her final days at home, rather than in a hospital. Sam said she saw joy in her mother-in-law’s eyes in photos taken with loved ones before her death, as if she was going out on her own terms.

“I can’t overstate how much it meant to all of us, her being able to die in her own home. It’s so much more peaceful than in a hospital, plugged up to a machine.  She could have been kept on life support, but she didn’t want that.  I highly recommend hospice for anyone who finds themselves in the position we were in.”