Palliative care is underutilized in nursing homes

INDIANAPOLIS – Palliative care, specialized medical care focusing on providing relief from the symptoms -- including pain -- and the stress of serious illness, is underutilized in nursing homes, despite the large number of nursing home residents living with a serious illness such as cancer, dementia, Parkinson’s disease, heart failure or chronic obstructive pulmonary disease.

A qualitative study, published in the Journal of the American Geriatrics Society, analyzes lack of palliative care referrals for nursing home residents and proposes ways to address this healthcare gap. In addition to examining existing referral patterns, the authors explore recommendations for ideal criteria and create a substantive framework for palliative care referrals in nursing homes.

Palliative care is not the same as, nor is it limited to, hospice care. Palliative care, a broader term, can be delivered to anyone with serious illness, often along with other therapies and treatments. 

Depending on the needs of the nursing home resident, one palliative care consultation may be all that is needed to review medications to establish a plan of care. Other residents who have ongoing symptom-management needs or who experience multiple changes in status, may need ongoing palliative care support.

“People in nursing homes may receive care there for years. They often have serious and advanced medical illnesses and have the need for the symptom management and supportive care that palliative care provides. Many nursing home residents with advanced disease, particularly those with advanced dementia, have goals of care consistent with comfort care,” said study co-author and Regenstrief Institute Research Scientist Kathleen Unroe, M.D., MHA. “While it is typically available in hospital and cancer center settings, unfortunately, palliative care is not consistently and widely available in every nursing home in the United States. It really depends on where you live. Non-hospice palliative care in nursing homes is hard to come by.” Dr. Unroe also is an associate professor of medicine at the Indiana University School of Medicine – Indianapolis.

“Primary care providers, which I am in the nursing home setting, can do a lot in terms of supportive care. There are some cases, however, where we need palliative care consultants to support us to provide specialized palliative care,” Dr. Unroe noted. “Despite documented unmet needs for palliative care in nursing homes, we struggle to deliver these services. It is, however, happening in some markets and some facilities. The goal of this study was to interview people who are doing this work, learning how they're doing it, so that we can create a best practice model and help define what the standard of care should be.”

To expand palliative care utilization in nursing homes, the research team indicates it is imperative that staff members be aware of the significance of palliative care and that they also be equipped with tools to identify when this care is needed,

Laying the foundation for the development of evidence-based referral criteria, the researchers propose the exploration of five domains or themes for identification of nursing home residents with unmet palliative care needs:

• goals of care support
• uncontrolled symptoms
• serious illness
• global indicators of decline
• end of life

“We need to keep figuring out creative solutions for frontline staff and primary care providers to have palliative care training so that we can meet many of the care needs of residents. We also need to have systematic processes to identify who needs a higher level, more specialized palliative care,” added Dr. Unroe. “If you or a loved one transitions into a nursing facility, it is absolutely appropriate to ask what they do for palliative care in that facility. Even if you or your loved one do not need those services today, you may in the future, and it's good to know the resources that are available.”

The research team continues to evaluate current practice and to develop and test new evidence-based best practice tools and models of care with the goal of creating and applying scalable models to disseminate palliative care practice in nursing homes.

“Our study highlights the need for the implementation of standardized referral criteria to ensure equitable access to palliative care in nursing homes," said Connie S. Cole, PhD, DNP, of the University of Colorado, the study's lead author. "Providing important education about palliative care allows residents and families to make informed decisions regarding their care preferences.”

“Palliative care in nursing homes: A qualitative study on referral criteria and implications for research and practice” is published in Journal of the American Geriatrics Society.

This work was supported by the National Institutes of Health’s National Institute on Aging, Grant/Award Number: 5T32AG044296 and NIH’s National Institute of Nursing Research, Grant/Award Number: K23NR017663; the Gerontological Advance Practice Nurses Association Foundation; University of Colorado School of Medicine, Anschutz Medical Campus; and the Gordon and Betty Moore Foundation.

Authors and affiliations:

Connie S. Cole, PhD, DNP, RN-GERO, NP-C, ACHPN¹; C. Robert Bennett, PhD, CPNP-AC¹;

Joan G. Carpenter, PhD, CRNP, ACHPN, FPCN²;

Regina M. Fink, PhD, APRN, CHPN, AOCN, FAAN^1,3;

Amy Jackson, BSN²;

Kathleen T. Unroe, MD, MHA, MS^4,5;

Cari R. Levy, MD, PhD¹.

¹University of Colorado School of Medicine, Aurora, Colorado, USA

²University of Maryland School of Nursing, Baltimore, Maryland, USA

³University of Colorado College of Nursing, Aurora, Colorado, USA

⁴School of Medicine, Indiana University, Indianapolis, Indiana, USA

⁵IU Center for Aging Research, Regenstrief Institute, Indianapolis, Indiana, USA

Kathleen Unroe, M.D., MHA 

In addition to being a research scientist with the Indiana University Center for Aging Research at Regenstrief Institute, Kathleen Unroe, M.D., MHA, is an associate professor of medicine at the Indiana University School of Medicine – Indianapolis and a practicing geriatrician.