How do we reconcile the gap between supporting the patient and family and allowing the patient the room to refuse food? By the time a patient is close to dying both the patient and family are worn out. But hope remains, and “if only” thinking continues. All of the treatment options may be exhausted yet the family may think, “if only he would eat, everything would be okay.” Rescue thinking. Hope in the presence of despair.
Cindy’s latest scan showed that her disease had progressed. She was tired and had no appetite. Even small amounts of food nauseated her. But she continued to try eating because not eating was an unacceptable option to her sister who was taking care of her. With the best of intentions, she badgered Cindy relentlessly about eating. Worse yet, she was angry that Cindy did not eat enough. Friends took the sister’s side, also well intentioned; they refused to allow Cindy to give up, which is what not eating represented. Cindy was angry, too. “They are abusing me by trying to force me to eat.” Hearing Cindy describe her actions as abuse resonated with her sister. “I’m so sorry,” she said, “I just want to help you.”
It was important to remind her that Cindy was capable of making her own choices. No one needed to take over for her. Like Franks wife, Cindy’s sister felt helpless because neither could change the progression of disease. They are not medically trained, but they know how to prepare food!
The communication challenge was to listen, clarify, support, and advocate for the patient even when it was contrary to the wishes of their loved ones. The questions we encounter as oncology nurses are varied, but sometimes the most difficult ones to answer are the ones patients and families think they know the most about. Eating is one of those.
Ann Brady is the symptom management care coordinator at the Cancer Center, Huntington Hospital, Pasadena, California.
1. Jatoi A. Anorexia and cachexia. CancerNetwork Web site. http://www.cancernetwork.com/cancer-management/anorexia-and-cachexia. Published June 1, 2015. Accessed February 26, 2016.