By Kelly Nash, RN, BSN

When Senator John McCain (R-AZ) passed away in August 2018 from aggressive glioblastoma just one day after his family announced he stopped treatment, it put a poignant highlight in Washington on a need of which oncology nurses are far too aware: palliative care and hospice.

Ideally, palliative care begins at the time of a cancer diagnosis and is aimed at managing symptoms throughout the cancer journey. Hospice begins when a patient’s prognosis is six months or less, yet in most cases, as McCain’s illustrates, patients begin hospice far too close to death. Many point to a lack of awareness and education—for patients and the public as well as oncology nurses and other palliative care providers.

The Palliative Care and Hospice Education and Training Act (PCHETA) H.R.1676/S.693 was introduced as identical bills into both the U.S House of Representatives and Senate on March 22, 2017, during the 115th Congress. The proposed legislation specifically addresses the lack of palliative and hospice care services in the United States by requiring participation from multiple government agencies in improvement efforts.

Support for PCHETA Research

“By improving and training in these areas and incentivizing the study and practice of palliative and hospice care, more patients suffering from serious illnesses will be able to have access to care that will improve their quality of life.” -Senator Ron Wyden (D-OR), who introduced an earlier version of a palliative care bill.

In the U.S. House of Representatives, PCHETA was authored and sponsored by Eliot L. Engel. Its intent is to improve communication, enhance coordination of care, and provide greater symptom management. H.R. 1676 currently has 285 cosponsors, including Tom Reed (R, NY-23) and Earl Carter (R, GA-1). In the Senate, PCHETA was sponsored by Tammy Baldwin (D-WI) and cosponsored by Shelley Moore Capito (R-WV), among 28 others. The bills have bipartisan support.

When the bill was introduced in 2017, the Patient Quality of Life Coalition (PQLC) presented a letter where fifty-two well respected organizations, including ONS, signed to show their support. The letter included signatures from ONS, the Alzheimer’s Association, American Geriatric Society, American Heart/Stroke Association, Leukemia and Lymphoma Society, National Coalition for Hospice and Palliative Care, Social Work Hospice and Palliative Care Network, Society of Palliative Care Pharmacists, and Susan G. Komen Foundation.

PCHETA’s Key Features 

The policy has three key features addressing (a) an unprepared workforce, (b) a lack of awareness or understanding, and (c) limited research pertaining to hospice and palliative care. These measures are consistent with recognized barriers to successful implementation of palliative care supported by current literature. The following would take place if the bill is enacted:

The Department of Health and Human Services would provide financial support and incentives to recognized palliative care and hospice education centers where practitioners can receive specialized training.

The Agency for Healthcare Research and Quality would be responsible for a campaign to increase awareness and understanding of palliative care among the general public and health care professionals. 

The National Institutes of Health would have to increase research pertaining to palliative care. 

PCHETA’s Current Status

The bill passed in the U.S. House on July 23, 2018. It now moves to the Senate, where, if passed, it will reach the president’s desk to be signed into law. ONS’s current advocacy efforts are focused on adding more Senate cosponsors to the bill to help expedite passage.

Why the Policy Is Significant to Me

As an oncology nurse, palliative care and hospice is something I am deeply passionate about. I often see patients failed by a medical model that does not allow integration of palliative care with aggressive treatment. Also, it is not uncommon for patients to be referred to hospice only when their passing is imminent, as Senator McCain’s experience showed. Not incorporating palliative care and hospice services can be attributed to overall lack of understanding, resistance from physicians, and limited resources, all of which PCHETA can help address.