Palliative Care Knowledge Lags in Home Care

Many home health care (HHC) clinicians, patients, and caregivers lack knowledge about palliative care, according to Columbia Nursing research recently published in the journal Home Healthcare Now. 

Misconceptions about palliative care—a patient- and family-centered approach to symptom management for people with serious illness—are common, noted the paper’s authors, led by Ashley Chastain, DrPH, senior project director of Columbia Nursing’s Center for Health Policy. Palliative care services are often confused with hospice or end-of-life care, but they can be provided at any stage of illness. Many HHC patients could benefit from home-based palliative care, the authors add, but just a fraction of HHC agencies provide these services.  

The authors developed a questionnaire encompassing all eight domains of the National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care, then pilot-tested it with 35 clinicians and 31 patients or caregivers from an HHC agency in the Northeast. 

Among the clinicians, 37% had provided hospice and/or palliative services in the past, while 46% had received palliative care training. However, 45% answered questions about pain management incorrectly—for example, agreeing that addiction is a major issue with long-term morphine use and that regular use of opioids often causes respiratory depression. There were also significant knowledge gaps in ethical and legal aspects of palliative care, like medical decision-making and healthcare proxies.   

Nevertheless, all clinicians surveyed agreed that patients with serious illness have the right to receive palliative care, and 97% said educating clinicians on palliative care is important. 

Nearly half of the patients and caregivers surveyed had never heard of palliative care, and only 13% had “sufficient” knowledge of it. Many had gaps in their knowledge of pain management and opioid use, as well as ethical and legal aspects of palliative care. However, 94% agreed or strongly agreed that they would consider palliative care for themselves or their loved ones facing a serious illness. 

“Given the demonstrated willingness of patients and caregivers to engage with palliative care, policies that promote awareness and education about these services are essential,” Chastain and her colleagues concluded. 

Other Columbia Nursing authors of the paper included Professor of Nursing Jingjing Shang, PhD; Jung Kang, PhD ’24; and Professor of Data Science Yihong Zhao, PhD.