Detroit, January 28, 2016 – A Arbor Hospice Institute researcher has co-authored an article that establishes palliative care standards for children with cancer and their families.
Cynthia Bell, who is also an assistant professor in Wayne State University’s graduate nursing program, teamed with eight other researchers from around the country to gather patient, family and clinician perspectives on end-of-life needs to establish the standards. The group’s recommendations have been published in the journal Pediatric Blood and Cancer – and the researchers hope they are adopted by hospitals and cancer centers nationwide.
The study addresses palliative care and psychosocial needs for pediatric oncology patients, focusing on how disease impacts patients on a psychological and social level. It addresses how patients and families are coping, addressing their fears and interacting with others as well as the effect the disease has on their personal and family lives.
“Anyone facing a life-threatening disease must cope with a tremendous number of uncertainties, which can lead to anxiety, depression and other issues,” Bell said. “Our group’s aim was to develop standards to reduce suffering throughout the disease process, incorporating psychosocial care early on. These standards take all the good things that hospice and palliative care provide and get them to patients earlier in the diagnosis.”
The research team reviewed nearly 200 psychosocial palliative care papers and studies in establishing the standards. In combining patient, family and clinician perspectives, they discovered many mutual themes:
- Holding onto hope
- Communicating honestly and communication approaches to include decision-making
- Striving for relief from symptom burden
- Symptom assessment and intervention to include physical and psychological symptoms
- Caring for one another
- Care access and overall care quality
- Social support to include primary caregiver support
- Sibling care
- Bereavement outreach
“Not a lot of researchers are looking at palliative care and end-of-life care for children and adolescents,” Bell said. “It is exciting to be part of a group so committed to having pediatric palliative care standards that can really help the outcome of patients and their families.”
Bell said taking research and translating it to patients’ bedsides would help institutions across the country improve care.
“We want to help health care providers communicate more effectively with patients and their families,” she said. “In oncology, it’s hard for doctors to talk openly because they feel like they’ve failed their patients by not being able to cure them. This lack of open communication early in the diagnosis robs patients of quality of life.
“We’ve come so far in oncology over the last several years and now have an 80 percent success rate with our pediatric patients. However, that means one in five children diagnosed with cancer still dies. If my child were among these patients, I’d want someone looking into how to improve their quality of life throughout the process. It’s about living well until we die.”
To read the full article, visit https://onlinelibrary.wiley.com/enhanced/doi/10.1002/pbc.25695/.
About Arbor Hospice
A nationally recognized leader in end-of-life care, Arbor Hospice is the original – and largest – hospice in the state. The nonprofit cares for more than 1,800 patients each day, raising more than $5 million each year to cover the cost of care for the uninsured and underinsured. HOM offers a broad range of services to enhance the quality of life at the end of life, including At Home Support™, our advanced illness management program, community-based palliative care and pediatric care programs. HOM provides grief support and counseling, caregiver education and support, and education programs for physicians and health care professionals through its research, training and education arm, the Arbor Hospice Institute. For more information, call 888.247.5701 or visit www.hom.org.