What are the personal last wishes of people with a life-limiting illness? Findings from a longitudinal observational study in specialist ... View Full Text


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Article Info

DATE

2022-03-22

AUTHORS

Anneke Ullrich, Wiebke Hollburg, Holger Schulz, Sven Goldbach, Annette Rommel, Marten Müller, Denise Kirsch, Katrin Kopplin-Foertsch, Julia Messerer, Louise König, Frank Schulz-Kindermann, Carsten Bokemeyer, Karin Oechsle

ABSTRACT

BackgroundPersonal 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).AimsTo 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.MethodsPatients 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.ResultsThree 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.ConclusionsIn 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. More... »

PAGES

38

Identifiers

URI

http://scigraph.springernature.com/pub.10.1186/s12904-022-00928-1

DOI

http://dx.doi.org/10.1186/s12904-022-00928-1

DIMENSIONS

https://app.dimensions.ai/details/publication/pub.1146474120

PUBMED

https://www.ncbi.nlm.nih.gov/pubmed/35317813


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24 schema:description BackgroundPersonal 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).AimsTo 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.MethodsPatients 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.ResultsThree 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.ConclusionsIn 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.
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30 schema:keywords AimsTo
31 ConclusionsIn
32 McNemar test
33 MethodsPatients
34 ResultsThree hundred sixty
35 T0
36 T1
37 absence
38 activity
39 analysis
40 approach
41 burden
42 care
43 changes
44 common themes
45 comparison
46 content
47 cross-sectional analysis
48 death
49 different forms
50 ended question
51 factors
52 family
53 final matter
54 findings
55 form
56 framework
57 frequent themes
58 friends
59 greater physical symptom burden
60 health
61 higher presence
62 illness
63 inpatients
64 last wishes
65 late phase
66 life
67 life-limiting illness
68 logistic regression analysis
69 longitudinal analysis
70 longitudinal observational study
71 longitudinal study
72 matter
73 observational study
74 onset
75 palliative care
76 past week
77 patient's last wishes
78 patients
79 people
80 person-centred care
81 phase
82 physical symptom burden
83 predictors
84 presence
85 quality
86 quality of life
87 questionnaire
88 questions
89 regression analysis
90 setting
91 setting-specific approaches
92 sixties
93 specialist palliative care
94 study
95 such wishes
96 symptom burden
97 test
98 themes
99 time
100 travel
101 weeks
102 wishes
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