When her mother was diagnosed after several years of illness with posterior cortical atrophy — a rare, terminal form of Alzheimer's that progressively disrupts complex visual processing — Melinda Mullet became a full-time caregiver.
For the last year of her life, Mullet's mother was moved to an adult care facility for around-the-clock care. But when Mullet and her family were told hospice care was an option for her mother, they were taken aback.
"When they mentioned it, we were shocked at the suggestion," Mullet says. "In our eyes, she wasn't dying. I was kind of resistant to that."
Mullet, 33, who graduated from Whitworth University this month, now recognizes that her doubts were due to a lack of information on what hospice care can provide to patients and caregivers. Now, Mullet serves as a hospice volunteer at Hospice of Spokane, and her Whitworth honors program thesis is dedicated to policy innovation for current Medicare regulations concerning hospice.
For instance, in Washington a new hospice can only be opened if it is determined that the proposed facilities or services are necessary to maintain quality patient care within a particular region or community. But in Idaho, a new hospice house can be opened at any time as long as the applicant is qualified.
This results in Hospice of Spokane volunteers driving to neighboring rural counties, even to the Canada border, to provide palliative care to those in the network.
"Seeing how the hospice organization was running and seeing the difficulties people were facing trying to get palliative care was eye-opening," Mullet says. "That's what made me look into it."
Mullet, along with her faculty adviser Bert Emerson, director of the honors program and associate professor of English, received the Hatfield Prize from the Center for Public Justice. The award is given annually to three Christian student-faculty pairs researching a social policy that impacts the well-being of children, families and communities. The pair received $6,500 to help them investigate disparities in hospice access and utilization.
A double major in American studies and English, Mullet has been working on a three-section policy report for the project titled "The Future of Hospice Care: A Christian Perspective." The report examines federal palliative care policies and how they impact Spokane County. In her report, Mullet focuses on Medicare Hospice Benefits. The report will be finished in June and published in September in a book along with the other two 2025 Hatfield Prize recipients' research.
The three sections — discover, frame and engage — serve different functions within the report.
"Discover shows what the problem is," Mullet says. "It's the history, the facts and the data research."
Mullet says Medicare has not updated its hospice benefits policy since it began making those benefits available in 1985.
"The initial policy was based on the last six months of a cancer patient's care," she says. "And now, especially with an increasingly older population, Alzheimer's is now the highest percentage of hospice care patients. There is a lot more variation now, and the disease trajectory of Alzheimer's is so much different than cancer."
One major policy change that could factor in those different disease trajectories and counter misconceptions that hospice is "giving up" is increasing terminal diagnoses to a year, from six months. Mullet says this could increase hospice use, improved quality of life for patients (some of whom outlive their prognosis while in hospice care), and peace of mind for families, while also reducing care costs, since hospice costs less than hospital services.
In the "frame" section, Mullet lays out a Christian story about how we should "care well for the dying." She then compares it to government's responsibility to care for people by providing physical health frameworks, networks, money and more. She also explores how nongovernmental institutions can provide emotional, social and spiritual support.
"That's what hospice care is," she says. "It's not just pain management, it's about quality of life."
The report contains over a dozen interviews with hospice providers, people who have had a family member in hospice care, church leaders and hospice volunteers about their experiences and conversations around death and dying to showcase exactly how federal policy impacts Spokane's hospice network.
Then, she fleshes out some recommended courses of action in the "engage" portion of the report.
"A lot of it is really saying how we don't talk about it well," Mullet says. "A result of that is that there are so many misconceptions, which is the biggest barrier to people accessing hospice care because they just don't understand what it is."
In reality, she says, "They provide all different kinds of medical equipment and knowledge on what the dying process is like. If you can't talk about why it's important to care well for the dying and how we die, then we can't talk about that in the first place."
Her published report will show that coordinated efforts between government, private sector providers and houses of worship can change public attitudes on hospice care.
She hopes the partnerships and policy innovation her report outlines will reach other academics and members of the public and eventually lead to lower hospital costs, decreased financial and physical strain on caregivers, and an increase in the dying person's quality of life.
"Whether you are 1 year old or 99 years old and you're dying, I think it's important to be there with people," she says. "Because life is important and people are important." ♦
