Care Preferences of Individuals Living with Advanced Cardiac and Respiratory Illness

Abstract

Thesis (Ph.D.)--University of Rochester. School of Nursing. Dept. of Health Practice Research, 2011.The purpose of this study was to describe the care preferences of individuals living with advanced cardiac and respiratory illnesses about their current and future health, understanding about options for care at the end of life, and expectations from health care providers. Much of what is known about patients’ care preferences at the end of life is based on studies of patients with cancer, often in hospice settings. Less is known about the care preferences of patients with end-stage cardiac and respiratory illnesses as they near end of life. Using a qualitative descriptive design, two in-depth interviews were conducted with 20 participants enrolled in a community home care agency. Criterion-based sampling was used to recruit patients with NYS class III and IV heart failure and oxygen dependant chronic obstructive pulmonary disease. Interviews were audio-taped, transcribed verbatim and entered into Atlas Ti 6.0 for data management. Participants described living with their advanced illness as being a trade-off. In order to function and live with their disabling shortness of breath, they had to adopt a complex care regimen and accept the use of adaptive equipment. Their understanding of illness, or lack thereof, impacted how participants managed their health, including reporting symptoms and seeking treatment. All participants expected their doctor would tell them if their illness became life-threatening, which all thought was in the future. Earlier incorporation of palliative care may improve symptom management and future care planning among this population. Research identifying patient preferences and expectations for care holds promise in facilitating better care for persons with advanced illnesses as they near the end of life