Recorded presentation

Victoria H. Raveis, PhD, Mailman School of Public Health, Columbia University, 100 Haven Avenue, Ste. 6A, New York, NY 10032, 212-304-5563, vhr1@columbia.edu, Peter Selwyn, MD, MPH, Family Medicine and Community Health, Montefiore Medical Center/Albert Einstein College of Medicine, 3544 Jerome Avenue, Bronx, NY 10467, and Keville Frederickson, EdD, BSN, Department of Nursing, Lehman College, 250 Bedford Park Boulevard West, Bronx, NY 10468.

Nursing has long recognized the value of end-of-life care, acknowledging the importance of end-of-life competencies as part of general nursing care rather than as a specialty, distinct from everyday practice. Knowledge on this life phase is essential to developing practice that is sensitive to patients’ care needs. An understanding of quality of life and care preferences at end-of-life needs to address that patients’ assessments may be different from the perspective of family members and/or health care providers and that these preferences may be fluid and impacted by situational factors. This presentation will describe an ongoing investigation funded by the National Institute of Nursing Research on care preferences and life goals of individuals who are dying with HIV/AIDS. The study is obtaining exploratory, descriptive information that will inform critical gaps in the knowledge base on the dying process and provide insights for clinical management of patients at the end of life. Low income and minority patients and their familial caregivers are participating in a series of in-depth interviews conducted during the final months of the patient’s life; a post-death interview is conducted with the familial caregiver following the patient’s death. Using qualitative data analytic techniques, information from patient and familial caregiver interviews are providing knowledge about patients’ perceptions of their illness as they approach end-of-life, their priorities and care preferences. A clearer understanding of these issues can enhance communication between the health care team, familial caregivers and the patient. It can also strengthen clinicians’ and familial caregivers’ efforts in facilitating person-centered care.

Learning Objectives:

• 3. Describe the priorities and care preferences of patients at the end of life.
  7. Articulate the illness and situational factors that inform priorities and care preferences at the end of life.
  11. Assess the challenges patients and families experience communicating priorities and care goals during the terminal illness.

Keywords: End-of-Life Care, Caregivers

Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.

Recorded presentation