Although the use of hospice at the end of life has dramatically grown over the past decade, we understand very little about the majority of deaths in the US. The purpose of this study is to describe the perspectives of people living with selected non-cancer illnesses about care at the end of life. Specifically, this study aims to explore their current and future goals for care, understanding about options for care at the end of life and expectations from health care providers. The National Institutes of Health suggested the need for a better understanding about the end of life experiences of people comprising various sub-groups, such as those living with life-limiting illnesses other than cancer. Hospice care is seldom used by these people and their perspectives regarding care at the end of life are unknown. Much of what is known about people with life-limiting illnesses and what they want as they near the end of life has been studied in patients with cancer diagnoses. Although patients with non- cancer illnesses do enroll in hospice as one option for care, many do not, and their perspectives on end of life care and expectations from providers are poorly understood. This qualitative descriptive design will describe the perspective of 20 participants with non-cancer life- limiting illnesses who reside at home enrolled in a community home care agency.
The specific aims i nclude: 1) To describe the perspectives of people with selected non-cancer illnesses nearing the end of life about their current and future goals for care;2) To explore their understanding about options for care at the end of life;and 3) To describe what they expect from health care providers as their illness progresses. The first-hand experiences of people living with non-cancer life-limiting illnesses are important elements to add to the existing body of knowledge on end-of-life care. The information learned from this study can inform future research initiatives that focus on deriving deeper theoretical perspectives or in the development of interventions to improve care for this group of people. Heart failure, chronic obstructive pulmonary disease, and stroke are common chronic illnesses that affect a vast number of people in the United States, and are among the top four leading causes of death. People who live with these illnesses are not often considered terminally ill and are supported by hospice care far less than people who have advanced cancer. Before care at the end of life can be improved for people with non-cancer illnesses, it is important to understand their perspectives about health, illness and expectations related to care at the end of life.

Agency
National Institute of Health (NIH)
Institute
National Institute of Nursing Research (NINR)
Type
Predoctoral Individual National Research Service Award (F31)
Project #
5F31NR011125-03
Application #
8006418
Study Section
National Institute of Nursing Research Initial Review Group (NRRC)
Program Officer
Aziz, Noreen M
Project Start
2009-01-01
Project End
2011-04-25
Budget Start
2011-01-01
Budget End
2011-04-25
Support Year
3
Fiscal Year
2011
Total Cost
$8,240
Indirect Cost
Name
University of Rochester
Department
None
Type
Schools of Nursing
DUNS #
041294109
City
Rochester
State
NY
Country
United States
Zip Code
14627
Lowey, Susan E; Norton, Sally A; Quinn, Jill R et al. (2014) A Place to Get Worse: Perspectives on Avoiding Hospitalization from Patients with End-Stage Cardiopulmonary Disease. J Hosp Palliat Nurs 16:338-345
Lowey, Susan E; Norton, Sally A; Quinn, Jill R et al. (2013) Living with advanced heart failure or COPD: experiences and goals of individuals nearing the end of life. Res Nurs Health 36:349-58