Palliative and Supportive Care

Original Articles

Barriers to hospice enrollment among lung cancer patients: A survey of family members and physicians

Dee W. Forda1 c1, Paul J. Nieterta2, Jane Zapkaa2, James S. Zollera3 and Gerard A. Silvestria1

a1 Department of Medicine, Division of Pulmonary, Critical Care, Allergy, and Sleep Medicine, Medical University of South Carolina, Charleston, South Carolina

a2 Department of Biostatistics, Bioinformatics and Epidemiology, Medical University of South Carolina, Charleston, South Carolina

a3 College of Health Professions, Medical University of South Carolina, Charleston, South Carolina

ABSTRACT

Objective: Most patients diagnosed with lung cancer present with advanced stage disease and have a poor chance of long-term survival. Despite the advantages of hospice care for lung cancer patients, many are enrolled late in the course of their illness or not at all. We sought to identify reasons for this pattern.

Method: A list of perceived barriers to hospice enrollment was generated and used to create two self-administered surveys, one for physicians and one for caregivers. After focus group testing, the finalized instruments were mailed to physicians in South Carolina and to caregivers of lung cancer patients who died under hospice care with a local hospice between 2000 and 2004.

Results: Fifty-three caregivers and 273 physicians responded to the survey. From the caregivers' perspectives, leading reasons for deferred hospice enrollment included patients' unanticipated rapid transition from well to sick and a belief that hospice means giving up hope. From the physicians' perspectives, impediments to earlier hospice enrollment included patients and caregivers overestimating survival from lung cancer and an (incorrect) assumption that patients need to be “DNR/DNI” prior to hospice enrollment.

Significance of results: Lung cancer patients may benefit from earlier introduction to the concepts of hospice care and more education regarding prognosis so that an easier transition in goals of care could be achieved. A smaller proportion of lung cancer patients may benefit from earlier hospice enrollment.

(Received December 24 2007)

(Accepted February 16 2008)

Correspondence:

c1 Address correspondence and reprint requests to: Dee W. Ford, Medical University of South Carolina, 96 Jonathan Lucas Street, 812-CSB, Charleston, SC 29425. E-mail: fordd@musc.edu