Associate Professor-Faculty of Nursing, University of Manitoba; Research Associate-Manitoba Palliative Care Research Unit, CancerCare Manitoba
When Advanced Cancer Patients Won’t Eat: Family Member Responses

Authors: McClement,1,2 SE, Harlos M 1,3

Affiliations: 1. University of Manitoba; 2. Manitoba Palliative Care Research Unit; 3 St. Boniface General Hospital

Source: International Journal of Palliative Nursing 2008;14(4):185-191.

What we did: We conducted a grounded theory study examining nutritional care experiences in advanced cancer from the perspective of patients (n=13), families (n=23), and health care providers (n=11).

Why we did this: Lack of appetite and marked weight loss are frequently experienced symptoms among advanced cancer patients. These symptoms are particularly worrisome for family members. While work examining the pathophysiology and pharmacological management of cancer anorexia-cachexia syndrome (CACS) has been conducted, little is know about the perspectives of family members regarding this vexing clinical problem. Therefore, we conducted a study to help examine and describe the meanings family members ascribe to decreased intake and weight loss, the behaviors these symptoms elicit, and their consequences for patients, families and health care providers. Our previously published work in this area 1-3 has detailed the behaviors and consequences of family members who adopt an aggressive approach in trying to get their dying relative to eat. The work reported on here describes the insights and experiences of family members who adopted more of a ‘letting nature take its course’ approach to the patient’s nutritional care.  

How we did this: We interviewed hospitalized patients experiencing CACS, their family members, and health care providers to obtain a better understanding of the salient issues experienced by each of these groups when the problem of anorexia and weight loss occurs in advanced illness. We also observed patient, staff, and family interactions at meal times on the palliative care ward, and the nature of discussions that occurred during patient conferences concerning nutritional care issues. Interviews were tape recorded verbatim, and analyzed in accordance with grounded theory procedures to discern major themes and categories present in the data.

What we found: Family members who adopted a ‘letting nature take its course’ approach to nutritional care believed that declining intake of food and fluid was a normal occurrence at the end of a terminal illness and that interventions designed to augment nutrition or hydration were futile in altering the outcome of the patient’s illness trajectory. Rather than focus their energies engaging on strategies designed to increase food intake, family members engaged in a repertoire of behaviors that consisted of finding other ways to care, such as participating in the patient’s physical care, being present, and protecting the patient from family members who were aggressively trying to get the patient to eat. Patients reported appreciation at not being harassed to eat, and family members felt that they had both appropriately respected the autonomy of their relative to make care decisions, and prevented the patient from having to suffer such symptoms as nausea and vomiting that can occur when the body cannot handle food.

Why might this study matter: Family members look to health care providers for information and support in dealing with a family member’s illness. The findings from this study provide members of the health care team with some specific, non-food oriented  strategies they can share with families that may diminish family members’ sense of  helplessness, are welcomed by the patient, and honor patient autonomy.

What are our next steps: This exchange article reports on one facet of the nutritional care experience of family members of patients with advanced cancer. In the process of learning about the ways in which family members respond to CACS, it became evident that many family members had significant knowledge gaps regarding the causes of cancer-anorexia-cachexia, and why such interventions as tube-feeding, total and parenteral nutrition are typically not appropriate in the face of advanced disease.4 Future research in this area will focus on the development of an educational intervention about the causes and management of CACS that can then be tested with family members in the context of a randomized controlled trial.

Exchange author information: Dr. Susan McClement, Associate Professor, Faculty of Nursing, University of Manitoba; Research Associate, Manitoba Palliative Care Research Unit;. CancerCare Manitoba 3017-675 McDermot Avenue. Winnipeg, Manitoba, R3E 0V9. susan.mcclement@cancercare.mb.ca.
 



References
 

McClement SE (2005). Cancer anorexia-cachexia-syndrome [CACS]: Psychological impact on the patient and family. Journal of Wound, Ostomy, and Continence Nursing JWOCN. Jul-Aug:32(4):264-8. 

McClement SE, Degner LF, & Harlos MS (2004). Family responses to declining intake in a terminally ill relative: Part I:”Fighting Back”. Journal of Palliative Care, 20(2), 93-100.

McClement  SE, Degner LF, Harlos MS (2003). Family beliefs regarding the nutritional care of a terminally ill relative. Journal of Palliative Medicine, 6(5):737-748.

Hoda D, Jatoi A, Burnes J, Loprinzi C, Kelly D (2005). Should patients with advanced, incurable cancers ever be sent home with total parenteral nutrition? A single institution’s 20-year experience. Cancer, 103(4), 863-8.