Objective: This study aimed to investigate individual quality of life and response shift in terminally ill patients in palliative care units. Response shift can be viewed as a form of adaptation to progressively deteriorating physical conditions, and was conceptualised as (1) changes in content of the most important life domains and (2) changes in the importance ratings of the most important life domains.
Methods: Twenty patients admitted to ten palliative care units in The Netherlands were selected by unit staff. Most patients were cancer patients and had life expectancies of less than two months. Individual quality of life, content of life domains and importance ratings of life domains were measured with the Schedule for the Evaluation of Individual Quality of Life (SEIQoL), a semi-structured interview protocol. Interviews were conducted by trained staff members one week, three weeks, and five weeks after unit admission.
Results: No significant changes in quality of life over time were found in a six-week period, even though the physical condition of patients rapidly deteriorated towards death. Quality of life levels were high: 75.3-79.8 on a scale from 0-100. Changes in content and importance of life domains were observed. These changes indicated a shift towards family and friends. Patients who showed response shift had worse quality of life than patients who did not.
Conclusions: (1) Using the SEIQoL for the measurement of individual quality of life and aspects of response shift in patients rapidly approaching death is feasible and accepted; (2) quality of life in terminally ill patients does not depend much on physical condition; (3) quality of life depends on the occurrence of response shift. It is recommended to explore ways to help terminal patients reach stability in their life domains. Implementing the SEIQoL or similar instruments in care facilities may aid this process. Alternative measures for response shift in terminal patients will be discussed.