A survey of 347 hospice and palliative care professionals sheds some much-needed light on the current state of palliative care.
There were several important findings, says Lori Bishop, MHA, BSN, RN, CHPN, vice president of palliative and advanced care at National Hospice and Palliative Care Organization (NHPCO). The goal was to understand the following:
• how many of NHPCO’s members are currently providing palliative care services;
• the depth of those services;
• the barriers and challenges members face.
“We also wanted to understand how best to assist them to ensure high-quality care and program sustainability,” says Bishop. The goal is to promote access to the right service at the right time for seriously ill individuals and their families. Some key findings from the survey include:
• 88% of respondents either have created a program or are in the process of developing one;
• of those with existing programs, most have been serving patients for more than three years. “Program sustainability can be a big issue in palliative care due to limited funding and reimbursement,” says Bishop. Notably, respondents identified reimbursement as their biggest challenge.
• Most programs use an interdisciplinary team.
“This is important for person-centered holistic care,” says Bishop.
All seriously ill individuals should have access to palliative and hospice care, says Bishop. While hospice care is a Medicare benefit and is accessible for most Americans, access to palliative care is more limited.
“Vulnerable consumers are confused about how to access palliative care and what services they can expect,” says Bishop.
Bishop says that ethicists in the hospital setting should ask the following:
• Do all seriously ill patients have timely access to palliative care services?
• Are seriously ill patients connected to community-based palliative care services prior to transition/discharge from the hospital?
• Do terminally ill patients have timely access to hospice care?
• Does the palliative care service provide metrics to demonstrate their value and ensure continuous quality improvement?
• Is the palliative care team interdisciplinary, including access to social workers and chaplains?
Most palliative care services are only available in-hospital. “Seriously ill individuals and their families would benefit from being able to access these services in the community, ideally in their homes,” says Bishop.
The National Consensus Project’s newly revised Clinical Practice Guidelines for Quality Palliative Care emphasize the importance of interdisciplinary care and care coordination as patients move across care settings.1 “Palliative care services in the hospital setting should strive to meet the guidelines,” says Bishop.
Most providers are following the guidelines, which set basic expectations for all palliative care programs. However, 32% of respondents were unsure, not familiar, or not following them at all.
“We revised the guidelines because the field of palliative care is growing so rapidly,” says Betty Ferrell, PhD, CHPN, FAAN, FPCN, co-chair of the guidelines. Ferrell is director and professor of nursing research and education at City of Hope in Duarte, CA.
There is recognition of the need to integrate palliative care into the practice of all clinicians caring for the seriously ill. “This edition of the guidelines continues to build the specialty practice of palliative care,” notes Ferrell. But it also emphasizes the role of all clinicians who care for the seriously ill, and across all settings and all ages. “This edition has added content and practice examples to demonstrate how palliative care can best be integrated into all care,” says Ferrell.
There are critical issues of ethical concern in all areas of the guidelines. These include pain and symptom management and care of patients approaching death. “We want ethicists to be familiar with the guidelines, help us to disseminate them, and to use them to support their practice,” says Ferrell.
1. Ferrell BR, Twaddle ML, Melnick A, Meier DE. National Consensus Project Clinical Practice Guidelines for Quality Palliative Care Guidelines, 4th Edition. J Palliat Med 2018; Sep 4. doi: 10.1089/jpm.2018.0431. [Epub ahead of print].
• Betty Ferrell, PhD, CHPN, FAAN, FPCN, Director and Professor, Nursing Research and Education, City of Hope, Duarte, CA. Phone: (626) 218-2825. Email: email@example.com.