Melinda Mullet: Hospice helps us die well. But barriers and misconceptions prevent access to services.

By Melinda Mullet

Hospice helps us die well. But barriers and misconceptions prevent access to services.

Often when we talk about access to health care, end-of-life care services go unmentioned. But as a hospice volunteer, I’ve learned that dying is the culmination of, not separate from, a robust continuum of care.

Today, with America’s rapidly increasing 65-plus population and the current administration’s slashes to Medicaid, our reluctance to view hospice as an integral part of health care abandons the dying and those caring for them and betrays the ideals our government and society are built on.

The mission of hospice is that no one dies alone or in pain. I’ve seen local hospice providers doing just that: when my mother went on hospice, when I’ve volunteered, and when I’ve researched barriers to hospice care in Spokane County. Supported by the Center for Public Justice and Whitworth University, I’ve researched historical conditions of hospice, analyzed public policy and conducted over a dozen interviews with local residents, hospice providers and faith leaders.

Unfortunately, my research concluded that there are both institutional and cultural obstacles working against both Spokane County hospice providers and those in need of dignifying end-of-life care.

For Americans 65 years or older, barriers to hospice are particularly concerning. The United States population is aging at exponential rates. By the end of this decade, every baby boomer will be older than 65. By 2040, 20% of the total U.S. population will exceed 65. Spokane County and the surrounding service area either matches or already exceeds these demographic projections.

Aging brings fulfilling lives, but also increased challenges from age-related diseases. Estimates project that the number of U.S. adults diagnosed with dementia will grow from approximately 514,000 cases in 2020 to 1 million by 2060. In only five years, the number of people living with Parkinson’s – a disease whose primary risk factor is age – is projected to be 1.2 million. Such terminal diseases typically involve a long, complicated dying process – exactly the kind of health care situation that hospice is best positioned to support.

For example, patients who enter hospice in the last six months of life experience higher satisfaction, better pain control, reductions in hospital days, and fewer ICU and hospital deaths. These benefits to individuals also represent an economic boon, saving $3.5 billion, for instance, in Medicare spending in 2019.

Despite the many proven benefits of hospice care, hospice access and utilization by beneficiaries of Medicare plateaued in 2019 around 50%, raising serious questions about individual well-being in end-of-life care and why so many people forgo hospice care.

The answers are complex. One barrier, especially for those in Eastern Washington’s rural areas, is a lack of infrastructure, which forces them to rely on Spokane-based hospices. That problem has been exacerbated by Medicaid cuts.

And although the Medicare Hospice Benefit escaped similar funding reductions, it suffers outdated qualifications and reimbursement structures unchanged since 1985, when the majority of patients on hospice had cancer. Today, the most common hospice patient has Alzheimer’s disease. Our fossilized policies are woefully insufficient for current and future end-of-life care needs.

But the primary barrier I found in my research is simply a general lack of knowledge about hospice.

In the absence of facts, misconceptions about hospice are pervasive, ranging from simple logistics, such as the extent of services hospice provides, to major misunderstandings – confusing hospice with medical assistance in dying or believing hospice is “giving up.”

Misconceptions about end-of-life care prevent potential beneficiaries from going on hospice once eligible, or even at all. More money is spent, quality of life degrades, and age-related dying carries unnecessary suffering.

To protect and promote life, including dignifying end-of-life care, we must talk about hospice. Before national and state-level policy solutions can be realized, individual citizens must speak up in support, in solidarity, and with compassion. Together, we can make Spokane, home to one of the oldest hospices in the nation, a shining example of what it means to die well.

To read an in-depth analysis of the barriers to hospice and the steps needed to ensure a robust end-of-life care in the future, my full report, “The Hope of Hospice: Reimaging End-of-Life Care in an Aging America,” is available at cpjustice.org/flipbook/2025-hatfield-prize-reports.

Melinda Mullet, of Spokane, graduated in May from Whitworth University with a degree in English and American Studies. Her experience as a full-time caregiver for a terminally ill family member inspired a passion for health care access and public health policy. She intends to pursue graduate studies in law and theology.