When we think of caregiving, we often think of helping elderly family members or friends. But many people—old, young, and in between—rely on caregiving services.
Parents care for children with serious illnesses. Spouses care for their sick partners. People with long-term illnesses, like Alzheimer’s, multiple sclerosis, or cancer, may need part- time or full-time caregivers.
Defining palliative care
Palliative care is a resource for anyone living with a serious illness. Palliative care is comprehensive treatment of the discomfort, symptoms, and stress of serious illness. Its primary purpose is to relieve your pain and other symptoms and improve your quality of life. Palliative care focuses on the patient’s emotional and spiritual needs, and quality of life—and can be provided in the hospital, at outpatient clinics, or at home.
Palliative care is not the same as hospice or end-of-life care, which is for patients after treatment stops.
“We now define palliative care as care for people with serious illness,” said Betty Ferrell, R.N., Ph.D. “The goal of palliative care is to offer comfort for the patient and support to the family.”
Dr. Ferrell is the director of the division of Nursing Research and Education at City of Hope National Medical Center in California. She works with NIH’s National Institute of Nursing Research (NINR), which leads palliative care research at NIH.
Expanding palliative care options
NINR and Dr. Ferrell are researching how to improve palliative caregiving for those in need.
Dr. Ferrell’s team studied how to best help lung cancer patients and their family caregivers in a recent study with the National Cancer Institute.
“While we’re assessing patients’ needs, we should also be assessing the family,” Dr. Ferrell said. “Our family caregiver intervention uses our quality of life model which is four dimensions of physical, psychological, social, and spiritual need.”
Her caregiver intervention tips include staying active, following a healthy diet, taking time to meditate and stay active, and talking to a financial advisor for budgeting help.
Another self-care tip? Make sure to see a health care provider regularly.
NINR coordinates research on end-of-life and palliative care with other institutes at NIH and around the country. In August 2017 the institute hosted a “Science of Caregiving” summit. It brought together researchers throughout the field to NIH’s main campus in Bethesda, Maryland.
Dr. Ferrell said caregiving research is essential to addressing the burden caregiving places on patients, families, and the public.
“It’s easy for science to be focused on creating one more drug, or have one more clinical trial,” she said.
“But there are some great champions who have really put caregiving on the agenda and have brought attention to family caregiving as a major public health concern.”