How Congress can improve seriously ill Americans' quality of life

If you were diagnosed with advanced cancer (the second leading cause of death in California) what would matter most to you: getting every possible disease treatment, even if it potentially degrades the quality of your life, or treating your symptoms to maximize your quality of life?

A National Library of Medicine literature review of 30 articles comparing quality versus length of life revealed 80% of cancer patients choose the quality of life over the length of life.

Even though hospice is designed to maintain or improve quality of life and palliative care is shown to help people feel better and live longer, 30% of participants in recent multiple focus groups shared the widespread misunderstanding that “hospice intentionally hastens death and the dying process.” In addition, 3 out of 4 of those surveyed lacked familiarity with the term “palliative care,” while others inaccurately conflated it with hospice. This public misperception about end-of-life care causes countless terminally ill people and their loved ones to suffer unnecessarily.

Palliative care is non-curative medical care for people with serious or advanced illnesses; using an interdisciplinary care approach, it focuses on providing relief from pain and other symptoms and promoting comfort throughout the course of the illness. It involves addressing the physical, emotional, intellectual, social and spiritual needs of a patient and their caregivers. The goal is to improve quality of life and empower people with advanced illnesses to understand and choose their comfort care options.

Palliative care is provided alongside treatment designed to cure your disease. A person can receive palliative care without receiving hospice care or even having a terminal diagnosis. Studies have shown that introducing palliation early in the disease process can prolong survival as well as improve quality of life.

Hospice is a service that provides care for people with an advanced, terminal condition who, based on reasonable medical judgment, are likely to die within six months or less. The goal of hospice is to maintain or improve the quality of life for someone whose illness, disease or condition is no longer responding to medical treatment, and the person is ready to forgo further attempts at curative treatments.

People receiving hospice care also receive palliative care to maximize the quality of their lived experience while they are dying. Medscape recently noted: “research has shown that the use of systemic anticancer therapy at the end of life is associated with late hospice enrollment, higher costs and potentially adverse quality and length of life.” Specifically, futile, burdensome anti-cancer treatments should be avoided during advanced disease stages, especially for frail, elderly patients.

Tragically, the hospice enrollment rate for Latino/Hispanic decedents is 38%, less than half the hospice enrollment rate (82%) among White decedents. A recent study showed 3 out of 4 Hispanic (75%) and Black people (74%) said they have never heard about palliative care, compared to only about half of White participants (49%).

Congress can help reduce these health care inequities by passing the bipartisan Palliative Care and Hospice Education and Training Act in 2023. Among other things, this compassionate legislation would require the Department of Health and Human Services to support palliative care and hospice education centers by improving the palliative care training of health professionals and establishing traineeships for individuals preparing for advanced-education nursing degrees, social work degrees or advanced degrees in physician-assistant studies in palliative care. It also would require the Agency for Healthcare Research and Quality to provide for a national education and awareness campaign to inform patients, families and health professionals about the benefits of palliative care.

Every American, regardless of their health care plan, racial or ethnic background, should have equal access to high-quality endof-life care.

Yanira Cruz is president and chief executive officer of the National Hispanic Council on Aging. Kim Callinan is president and CEO of Compassion & Choices, the nation's largest and oldest nonprofit organization that advocates for improving end-of-life care.