A singing choir: Understanding the dynamics of hope, hopelessness, and despair in palliative care patients. A longitudinal qualitative study.
OBJECTIVE
Hope, despair, and hopelessness are dynamic in nature; however, they have not been explored over time. The objective of the present study was to describe hope, hopelessness, and despair over time, as experienced by palliative care patients.


METHODS
We employed a qualitative longitudinal method based on narrative theories. Semistructured interviews with palliative care patients were prospectively conducted, recorded, and transcribed. Data on hope, hopelessness and despair were thematically analyzed, which led to similarities and differences between these concepts. The concepts were then analyzed over time in each case. During all stages, the researchers took a reflexive stance, wrote memos, and did member checking with participants.


RESULTS
A total of 29 palliative care patients (mean age, 65.9 years; standard deviation, 14.7; 14 females) were included, 11 of whom suffered from incurable cancer, 10 from severe chronic obstructive pulmonary disease, and 8 from severe heart failure. They were interviewed a maximum of three times. Participants associated hope with gains in the past or future, such as physical improvement or spending time with significant others. They associated hopelessness with past losses, like loss of health, income, or significant others, and despair with future losses, which included the possibility of losing the future itself. Over time, the nature of their hope, hopelessness, and despair changed when their condition changed. These dynamics could be understood as voices in a singing choir that can sing together, alternate with each other, or sing their own melody.


CONCLUSIONS
Our findings offer insight into hope, hopelessness, and despair over time, and the metaphor of a choir helps to understand the coexistence of these concepts. The findings also help healthcare professionals to address hope, hopelessness, and despair during encounters with patients, which is particularly important when the patients' physical condition has changed.
Section of Medical Ethics,Department of General Practice,Academic Medical Center,University of Amsterdam,Amsterdam,The Netherlands.
Erik
E
Olsman
Department of Ethics of Care,University of Humanistic Studies,Utrecht,The Netherlands.
Carlo
C
Leget
Faculty of Nursing,University of Alberta,Edmonton,Alberta,Canada.
Wendy
W
Duggleby
Section of Medical Ethics,Department of General Practice,Academic Medical Center,University of Amsterdam,Amsterdam,The Netherlands.
Dick
D
Willems
D000223:Adaptation, Psychological; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D005260:Female; D065026:Hope; D006801:Humans; D008016:Life Change Events; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000523:psychology*; D036301:Qualitative Research
Despair; Hope; Hopelessness; Hospice; Palliative