A couple weeks ago, Aaron Jordan lifted his long-time girlfriend, Cheryl Swan, in his arms and carried her to their second-floor bathroom in their Kalispell home.
Jordan stepped into the bathtub to help her into the water, getting his socks and pant legs wet. It didn’t bother him.
The pair was married on Oct. 22 after 14 years of dating. In June, Swan, 54, was diagnosed with Stage-4 leomyomasarcoma, a rare and aggressive form of cancer that attacks the body’s smooth muscle. By September, Swan’s health had deteriorated to the point of immobility, a distinct change from her usually active nature, family members said. Their physician suggested they contact a local hospice facility.
Donna Nelson, a registered nurse and a case manager with Frontier Home Health and Hospice, works with Swan and her family at their home. In-home care is important to Swan, Jordan said. Before she got sick, Swan worked as a certified nursing assistant in a nursing home.
“She wanted to never end up in a nursing home,” Jordan said. “She’s really happy being at home.”
Hospice provided the tools and information needed to fulfill Swan’s wishes before she passes and help the family deal with the incredible weight of unexpected sickness, Jordan said.
“It makes it so much easier when, you know, you’re already grieving,” Jordan said.
Hospice facilities were created in 1974, but hospice workers said their resources are still underused and often misunderstood. The overall premise is to make a terminally ill patient as comfortable as possible without seeking a cure.
“It’s all about what your patient’s goals are,” Nelson said.
Hospice allows a patient to be fully in control of their care, Nelson said. Whatever they choose to do, hospice workers will accommodate the patient by explaining both sides to each decision, whether it’s about taking medication or traveling to see family.
End of life care can be an uncomfortable topic, but recently surfaced as a hot-button issue during the national debate over health care reform. A portion of one bill seeks to give Medicare reimbursement to physicians for time spent counseling patients on end-of-life treatments. During the summer, reform opponents said it would amount to a government-run “death panel,” looking to push the elderly and sick into cheaper care.
Kalispell Frontier Hospice Director Barbara Davis Hinkley, RN, asserted that hospice is not giving up on life, but rather a gift to help the patients and their families with the challenges and inevitabilities of terminal illness.
This option can be difficult for most Americans to wrap their minds around, hospice workers said. Medical procedures and care are almost entirely centered on finding a cure and aggressively treating a disease, they said, even if the treatment only extends the person’s life without curing the illness.
“This society is not comfortable with death at all,” Nelson said.
Nelson contends that the hardest part of her job is getting physicians to recommend hospice early enough. The average patient’s treatment at Frontier Hospice lasts 41 days, which the workers say is rarely enough time to accomplish the patient’s goals.
Deciding when a patient should choose hospice is not an exact science, Davis Hinkley said. She described the right time as a patient having the courage to ask their physician if their treatments are going to cure them, and, if not, weighing how they value quality of life.
If anything comes out of the debate over national health care reform, Davis Hinkley said she hopes it will at least open up the conversation between doctors and their terminally ill patients.
To be eligible for hospice and the Medicare and Medicaid benefits that pay for the services, a physician must declare their patient terminally ill with six months to live.
Once a patient enters hospice care, a team of specially trained professionals and volunteers step in. Each patient is given a registered nurse as a case manager who visits twice a week to perform an assessment. Other members include a medical director, a chaplain, a social worker, nurses’ aides and the patient’s attending physician. The medical team is available day and night. Volunteers act as companions, keeping the patient company with a game of cards or conversation.
Medicare benefits pay for a large portion of the costs, including medications related to the patient’s care, medical equipment and bereavement services. Medicare also acts as the regulatory body for hospice care, with each state responsible for monitoring its facilities.
In Swan’s case, she was too young to qualify for Medicare and had too many assets to qualify for Medicaid. Davis Hinkley said Frontier Hospice took her case on for free, which is not uncommon but is decided on a case-by-case basis.
On a recent visit to Swan’s home, Nelson asked about Swan’s physical and emotional needs. She also focused on Swan’s grown children. She asked Kanisa Witherspoon, 31, how she was coping.
“I’m good,” Witherspoon said quickly.
Nelson eyed her for a couple seconds before saying gently, “Liar, liar, pants on fire.”
“Well, who’s good when their mother’s passing?” Witherspoon replied with an anxious, tight smile.
Nelson relays this type of information to the team social worker and the chaplain, who in turn offer counseling. Blunt questions are part of the bereavement process, Nelson said, but they come once the family and hospice workers develop a trusting relationship. Once the family can accept that a loved one is dying, they can start down the road to healing and living a fruitful life after the patient has passed on, she said.
Sitting in his mother’s living room, Tim Witherspoon said it was initially overwhelming to take care of his suddenly sick mother, but the hospice staff helped him know what to expect.
“It’s a relief from pressure,” Witherspoon said. “I didn’t know quite what to do. They tell us how to cope with it.”
Swan’s other daughter Terri Mansfield-Wright, 27, works as a CNA in the same nursing home her mother did. She said it was difficult for her independent and active mother to become immobile. Her mom preferred to be in control of her care, a deep-seated characteristic Mansfield-Wright remembers from childhood.
Hospice has given her mother that control, and helped Mansfield-Wright even though she has experience with terminal illness at her job.
“It’s nice that there’s somebody that you can talk to besides your own family,” Mansfield-Wright said. “You don’t feel as helpless.”
But it is also important for the staff to have coping skills and a strong sense of self. With such extreme circumstances and little time to accomplish life goals, the relationship between patient and caregiver is often quite intimate, Nelson said.
As the bereavement coordinator and social worker at Frontier Hospice, Mary Jordt said the profession is not for everyone.
“You look at your own mortality,” Jordt said.
And despite the emotional toll, Davis Hinkley said she sees her business as a gift and an honor. Her passion for her work brings her joy, she said, and is based on a simple philosophy.
“To let people die the way they want to,” Davis Hinkley said. “Proud and with dignity.”