Caregivers for patients with advanced cancer provide crucial support but often have unmet needs. During a session on Saturday, April 13, 2019, at the ONS 44th Annual Congress in Anaheim, CA, J. Nick Dionne-Odom, PhD, RN, ACHPN, of University of Alabama at Birmingham, and Tara Albrecht, PhD, ACNP-BC, RN, of Virginia Commonwealth University School of Medicine in Richmond, discussed new research in palliative care and the role of nurses in supporting patients and their families.

Supporting Family Caregivers With the ENABLE Model

Although 72% of caregivers perform nursing-related activities, 43% do so without adequate training, Dionne-Odom said. In addition, being a caregiver often leads to serious health issues, including anxiety, depression, physical health effects, grief, and higher mortality.

“As an ICU nurse for 10 years, I witnessed countless families become traumatized by their loved one's dying process,” Dionne-Odom said. “Much of this experience could have been avoided or at least minimized with more thoughtful planning when this loved one was first faced with a serious illness.”

Dionne-Odom discussed the ENABLE Model, a framework for providing early oncology palliative care for family caregivers. ENABLE leads to a decrease in depression, grief, and stress, as well as an increase in quality of life (QOL):

  • E = Educate
  • N = Nurture
  • A = Advise
  • B = Before
  • L = Life
  • E = Ends

In the model, three sessions are conducted to chart a course, followed by monthly check-in calls and a bereavement call. Topics include the importance of the caregiver role, problem solving, self-care, symptom management, communication, and decision making, including advanced care planning.

 “Express to caregivers how essential their role is in the patient's care,” Dionne-Odom said. “Explain that the role can be overwhelming and that they will likely need to reach out for extra practical and emotional support. Emphasize that they need to take care of themselves so they can take good care of their family member.”

The Integration of Palliative Care in Clinical Practice

In 1990, the World Health Organization (WHO) included palliative care in its Comprehensive Pain Relief report, Albrecht said. By 2017, the American Society of Clinical Oncology (ASCO) had updated clinical guidelines recommending palliative care early after diagnosis and concurrently with treatment for all patients with advanced cancer.

Most studies of palliative care have been in patients with solid tumors. Results support the following benefits of palliative care:

  • Patient-reported outcomes (e.g., QOL)
  • Improved communication
  • Increased satisfaction
  • Increased survival
  • Better caregiver outcomes
  • Reduced healthcare costs

 “Given the evolution of palliative care and the current state of research in this field, we have numerous important and unanswered questions,” Albrecht said. “For example, given that much of the palliative research to date has included non-Hispanic, Caucasian individuals, it is important to understand if the current models of palliative care are as effective in a more ethnically and racially diverse population, or if modifications and considerations need to be adopted.”

How to introduce and provide palliative care services to patients with hematologic malignancies is an important focus. “Further research in this area will be invaluable to improving the delivery of care to this unique population,” Albrecht said.