The National Coalition for Hospice and Palliative Care (NCHPC) has chosen a panel of 33 palliative care experts to develop the 5th edition of the Clinical Practice Guidelines for Quality Palliative Care.
Originally created in 2004, through the National Consensus Project, the guidelines established the first national, evidence-based standards for the palliative care field. The guidelines have been updated four times since 2004 and have been endorsed by more than 90 health and professional health care worker organizations.
To update the guidelines, a panel of serious illness care experts who come from a variety of health care backgrounds will review the guidelines alongside the current evidence base.
The purpose of the guidelines are to define standards for interdisciplinary palliative care across all care settings. The standards are organized into a framework of eight domains which include structure, physical, psychological, social, spiritual, cultural, end-of-life and ethical.
However, the guidelines provide more than a checklist for health care professionals to use while working with patients. Panel Co-Chair Dr. Kristina Newport, chief medical officer for the American Academy of Hospice & Palliative Medicine (AAHPM) and chief of palliative care at Penn State Health, said that she views the purpose of the guidelines in a couple of different ways.
“The first is really the aspiration and the mission of it. And the mission is to provide equitable access to the highest quality serious illness care in our country,” Newport told Palliative Care News. “And I think that is a unique part of the organization that backs this. The coalition [NCHPC] is representative of multiple organizations around the country that have different interests and they represent different disciplines or different areas of the field.”
Newport said another way to think about the purpose of the guidelines is how they are used. The guidelines provide a framework for building palliative care programs while also providing the supporting evidence that health care system decision makers want to see before approving those programs.
“They want to know that there is some really good evidence and thought behind what makes good quality palliative care programs,” Newport said.
The guidelines play an important role in the day-to-day clinical practice of palliative care professionals. They remind clinicians of all the different areas of communication that need to be addressed to build relationships with the interdisciplinary care team, family members and the patient, according to Billy Rosa, palliative care nurse practitioner and assistant attending behavioral scientist at Memorial Sloan Kettering Cancer Center. Rosa is also a guideline update panel co-chair.
“The most important point of my practice is intention and to deliver dignified care. And the single most important facet of good care is empathic, effective and efficient communication that is focused on eliciting personhood from this human being across from me,” Rosa told Palliative Care News. “And so I think the guidelines give me a literal scaffolding for how I guide conversation, how I elicit information, and then ultimately how I plan to deliver or care in collaboration with this broader team.”
The 4th edition of the guidelines was published in 2018 and neither of the co-chairs are aware of a specific timeline that influenced the decision to organize an update. They did, however, point to an accumulation of changes in the field of palliative care that have occurred during the last eight years.
“We’ve had a pandemic in this interim, which has fundamentally changed health care culture, and how people deliver and receive care,” said Rosa
Newport mentioned that telehealth was not as prevalent during the previous update and acknowledged that it has had an impact on the delivery of care.
The co-chairs listed other changes that could be addressed in the update including pediatric care, culturally appropriate care, home-based care and a reassessment of the needs of an aging population in the United States and internationally. Newport also noted the importance of looking at the changes in the way palliative care is being paid for.
A growing trend in specialty care types developing their own palliative care guidelines has created a sense of urgency to ensure that the NCHPC guidelines continue to provide a foundational and relevant framework.
“We just saw another American Society of Clinical Oncology (ASCO) palliative care guideline update in 2024,” said Rosa. “We see it in GI and liver disease. We see it in neurology. And so as this continues to grow, there needs to be some kind of consistent revisiting of the central guidelines of high quality palliative care that will inform all these other specialties and fields.”
The expert panel includes more representation than in the past, according to Newport, and the co-chairs agree it illustrates how palliative care has evolved, and the extent to which health care in general has changed.
“I think that scopes of practice have fundamentally shifted as health systems have become more and more burdened, and the workforce has needed to reconfigure around this team sport mentality,” Rosa said. “ I think it’ll be interesting and very needed for these 33 experts from so many different disciplines to come together and talk about what it [palliative care] really looks like in 2026, 2027.”
