What are the personal last wishes of people with a life-limiting illness?: Findings from a longitudinal observational study in specialist palliative care

BACKGROUND: Personal last wishes of people facing a life-limiting illness may change closer to death and may vary across different forms of specialist palliative care (SPC).

AIMS: To explore the presence and common themes of last wishes over time and according to the SPC settings (inpatient vs. home-based SPC), and to identify factors associated to having a last wish.

METHODS: Patients enrolled in a longitudinal study completed questionnaires at the onset (baseline, t0) and within the first 6 weeks (follow-up, t1) of SPC including an open-ended question on their personal last wishes. Last wishes were content analyzed, and all wishes were coded for presence or absence of each of the identified themes. Changes of last wishes (t0-t1) were analyzed by a McNemar test. The chi-square-test was used to compare the two SPC settings. Predictors for the presence of a last wish were identified by logistic regression analysis.

RESULTS: Three hundred sixty-one patients (mean age, 69.5 years; 49% female) answered at t0, and 130 at t1. In cross-sectional analyses, the presence of last wishes was higher at t0 (67%) than at t1 (59%). Comparisons revealed a higher presence of last wishes among inpatients than those in home-based SPC at t0 (78% vs. 62%; p = .002), but not at t1. Inpatient SPC (OR = 1.987, p = .011) and greater physical symptom burden over the past week (OR = 1.168, p < .001) predicted presence of a last wish at t0. Common themes of last wishes were Travel, Activities, Regaining health, Quality of life, Being with family and friends, Dying comfortably, Turn back time, and Taking care of final matters. The most frequent theme was Travel, at both t0 (31%) and t1 (39%). Themes did not differ between SPC settings, neither at t0 nor at t1. Longitudinal analyses (t0-t1) showed no significant intra-personal changes in the presence or any themes of last wishes over time.

CONCLUSIONS: In this late phase of their illness, many patients voiced last wishes. Our study suggests working with such wishes as a framework for person-centered care. Comparisons of SPC settings indicate that individualized approaches to patients' last wishes, rather than setting-specific approaches, may be important.