New National Guidelines Seek to Improve Access to Palliative Care for People Living with Serious Illness
Richmond, VA — New national palliative care clinical practice guidelines seek to ensure the millions of people living with serious illness, such as heart failure, lung disease and cancer, have access to vital care that can help meet their needs. The guidelines promote improved access to palliative care, which is focused on giving patients and their caregivers relief from the symptoms and stress of serious illness, is based on need, not prognosis, and can be provided along with disease-focused treatment.
The Clinical Practice Guidelines for Quality Palliative Care, 4th edition calls for a seismic shift in the delivery of this specialized care by urging all health care professionals and organizations to integrate it into the services they provide to people living with serious illness. The guidelines also include tools, resources and practice examples to help with implementation.
“Palliative care should be provided throughout the community wherever people living with serious illness receive care, including outpatient clinics, cancer centers, long-term care facilities, office practices, homeless shelters, dialysis units and at home,” said Martha L. Twaddle, MD, FACP, FAAHPM, HMDC, co-chair of the guidelines. “To reach that goal, the guidelines promote consistent criteria and encourage continuity of palliative care across settings.”
“As a representative for patients in the stakeholder group, National Patient Advocate Foundation contributed person-centered input to the guidelines based on what really happens to patients and families over the course of treatment,” said Rebecca Kirch, executive vice president of health care quality and value. “We believe these new guidelines will advance the cause of truly person-centered care and help more people access the benefits of palliative care.”
The guidelines have been endorsed by more than 80 national organizations, including, the American Heart Association/American Stroke Association, American Academy of Pediatrics, American Board of Internal Medicine, American Cancer Society, American College of Surgeons and American Nurses Association.
The Palliative Care Team
Palliative care traditionally is provided by a specially trained team of doctors, nurses, social workers, chaplains and other specialists who work with a patient’s health care team to provide an integrated layer of support and improve the quality of life for both the patient and family. Because there is a limited availability of palliative care specialists and teams, the guidelines include recommendations to other health care professionals for incorporating palliative care principles and best practices into the care they provide.
The Evolution of National Palliative Care Guidelines
The guidelines were developed by the National Consensus Project for Quality Palliative Care, comprised of 16 national organizations with extensive expertise with palliative care and hospice. Published by the National Coalition for Hospice and Palliative Care, the full guidelines are available online to download or purchase.
First published in 2004, the guidelines have been periodically updated to reflect the growth and evolution of palliative care and hospice. Hospice is a type of palliative care for people living with serious illness whose life expectancy is measured in months, rather than years.
The 4th edition includes new recommendations, calling for: each person living with serious illness to receive a comprehensive assessment to determine their needs and priority goals; assessment of the needs of families and caregivers for support and education; improved coordination of care, especially as the person living with serious illness transitions from one place to another; culturally inclusive care; and communication among all those caring for the person, from the palliative care team to the family to other health care professionals and providers of community resources.
One of the key features of guidelines is the inclusion of recommendations for integrating palliative care principles and best practices in various settings. The guidelines focus on specific clinical and organizational strategies, including treatment considerations and screening and assessment elements, tools and resources in addition to the practice examples. Health care organizations will choose how to best apply the guidelines criteria based on their patent populations and care settings.
“We realize it may be overwhelming for providers to offer palliative care if they haven’t previously,” said Betty Ferrell, PhD, MA, FAAN, FPCN, co-chair of the guidelines. “That’s why the guidelines provide extensive real-world practice examples to illustrate what quality palliative care can and should look like in the community.”
Current Evidence and Future Research
The RAND Evidence-Based Practice Center systematically reviewed the literature to formally grade the evidence and identify gaps for future research. Findings suggest that more well-designed trials of commonly used interventions in palliative care across populations are needed to bolster the evidence base in key areas. These areas include: early/integrated palliative care; complementary and alternative therapies (e.g. acupuncture, massage and medication) for symptom management; life review/dignity therapy and other spiritual interventions; and advance care planning interventions.
The guidelines were funded by a grant from the Gordon and Betty Moore Foundation to enable the National Coalition for Hospice and Palliative Care to convene a Stakeholder Summit, and develop, disseminate, and implement the 4th edition of the National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care. Additional support for the systematic review of the research evidence was provided by the Gordon and Betty Moore Foundation, Gary and Mary West Foundation, The John A. Hartford Foundation and Stupski Foundation.
The National Consensus Project for Quality Palliative Care (NCP) is an initiative of the National Coalition for Hospice and Palliative Care (Coalition) to further define and underscore the value of palliative care, and to improve upon the delivery of palliative care in the United States, including through the development of clinical practice guidelines for quality palliative care. The Coalition comprises 10 leading national hospice and palliative care organizations dedicated to advancing and advocating for quality care for people with serious and life-limiting conditions and their families. For more information, visit https://www.nationalcoalitionhpc.org/ncp/.
National Patient Advocate Foundation amplifies the patient’s voice in support of greater access to affordable, equitable and quality care. As the advocacy affiliate of the Patient Advocate Foundation, NPAF uses qualitative and quantitative data from real patient experiences to advocate for change.