COMMUNICATION IN LATE-STAGE CANCER: EXPLORING HOSPICE DECISION

Abstract

DESCRIPTION (provided by applicant): Communication in Late-stage Cancer: Exploring Hospice Decisions This application addresses broad Challenge Area (04): Clinical Research and specific Challenge Topic, 04-NR-103*: Methods to Enhance Palliative Care and End-of-Life Research. Estimates indicate that 388,322 people over age 65 died from cancer in 2005 and that almost 60% of all newly diagnosed malignant tumors and 70% of all cancer deaths occur in this age group.2,9 People who are age 65 or older are 10 times more likely to be diagnosed with cancer and 15 times likely to die from it than are people under age 65.10 Cancer of the pancreas, stomach, rectum, lung, leukemia, non-Hodgkin's lymphoma, liver, kidney, and ovarian cancers account for two-thirds to three-quarters of cancer deaths in older adults.10 Each cancer trajectory is unique and distinct, being influenced by numerous factors which include: the type of cancer, its lethality and stage at diagnosis, the available treatment and its side effects, all coexisting comorbid conditions, the person's age, and the nature of communication with providers and family members.11 Each type of cancer is accompanied by different symptom clusters which shape and influence the lived experience of cancer and are likely to inform communication and decision-making about the utilization of services such as home care and hospice. While 44% of all hospice patients have cancer and four out of five are over age 65, many older cancer patients only utilize hospice for short periods of time or decline it altogether. The overall purpose of this study is to explore and describe how, when and with whom, older cancer patients communicate their concerns and needs for care during the advanced stages of the illness and compare the decision-making and service utilization of cancer patients who have enrolled in hospice with those who have not. Specifically the study aims to: 1. Explore the factors that contribute to older cancer patients' decisions about service utilization and the timing of their decisions; 2. Compare decision-making and service utilization patterns of older cancer patients who are enrolled in hospice with those who are not 3. Determine how decision-making about service utilization is different relative to the type of cancer and its trajectory; 4. Explore family caregivers' roles in decision-making. This exploratory descriptive study will employ a sequential mixed methods design involving multiple types of data which will be linked for the purpose of developing complementarity between the overlapping perspectives of cancer patients and their caregivers. Data will be collected through in-depth interviews which will include a combination of open-ended and categorical questions as well as standardized measures.34 The rationale for using mixed qualitative and quantitative data is to generate a deeper understanding of the complexities of hospice decision making. The results will provide information about clinical decisions in 'real time' by gathering the experiences of cancer patients and their families in their own words. Guided by a 7 stage framework of decision-making32, participants will be asked about how and when they chose the services they are using. The resulting descriptive profile will contribute to a deeper understanding of how older people talk about and decide to seek care during in advanced cancer. The results of this study are relevant to public health in three ways. (1) Understanding how older people comprehend, perceive and experience advanced cancer and the availability of services at life's end has direct relevance to quality of life in advanced cancer. (2) Exploring decision-making about hospice enrollment or declination and the timing of that decision will inform healthcare providers about communication with older cancer patients and their families. (3) Understanding how end-of-life decisions are made is essential for the efficient planning and delivery of comprehensive services for the growing number of adults who will die from cancer.