Caregivers’ divergent perspectives on patients’ well-being and attitudes towards hastened death in Germany, Poland and Sweden
| Autor: | Krzysztof Barć, Olga Helczyk, Erica Stenberg, Andreas Herrmann, Cynthia Vázquez, Jürgen Keller, Katharina Linse, Dorothée Lulé, Ingo Uttner, Julia Finsel, Anna Maksymowicz-Śliwińska, Ann-Cristin Häggström, Natalia Szejko, Magdalena Kuźma-Kozakiewicz, Peter M. Andersen, Krzysztof Nieporecki, Albert C. Ludolph, Olof Semb, Susanne Petri, Katarzyna Ciecwierska, Thomas Meyer |
|---|---|
| Rok vydání: | 2021 |
| Předmět: |
Male
Gerontology amyotrophic lateral sclerosis caregivers Palliative care epidemiology [Germany] Existentialism 03 medical and health sciences 0302 clinical medicine Quality of life (healthcare) Germany medicine Humans ddc:610 Amyotrophic lateral sclerosis Sweden palliative care business.industry Amyotrophic Lateral Sclerosis epidemiology [Sweden] medicine.disease Caregivers Attitude quality of life Neurology epidemiology [Poland] Well-being Quality of Life complications [Amyotrophic Lateral Sclerosis] Poland Neurology (clinical) business Decision making 030217 neurology & neurosurgery |
| Zdroj: | Amyotrophic lateral sclerosis & frontotemporal degeneration 23(3-4), 252-262 (2022). doi:10.1080/21678421.2021.1936064 |
| ISSN: | 2167-9223 2167-8421 |
| DOI: | 10.1080/21678421.2021.1936064 |
| Popis: | Background: During the course of amyotrophic lateral sclerosis (ALS), patients and their families are faced with existential decisions concerning life-prolonging and -shortening measures. Correct anticipation of patient's well-being and preferences is a prerequisite for patient-centered surrogate decision making. Methods: In Germany (N = 84), Poland (N = 77) and Sweden (N = 73) patient-caregiver dyads were interviewed. Standardized questionnaires on well-being (ADI-12 for depressiveness; ACSA for global quality of life) and wish for hastened death (SAHD) were used in ALS patients. Additionally, caregivers were asked to fill out the same questionnaires by anticipating patients' perspective (surrogate perspective). Results: Caregivers significantly underestimated patients' well-being in Germany and Poland. For Swedish caregivers, there were just as many who underestimated and overestimated well-being. The same was true for wish for hastened death in all three countries. For Swedish and Polish patients, caregivers' estimation of well-being was not even associated with patients' responses and the same was true for estimation of wish for hastened death in all three countries. Older caregivers and those with the most frequent encounter with the patient were the closest in their rating of well-being and wish for hastened death to the patients' actual state, while caregivers with chronic disease him/herself were more likely to underestimate patient's well-being. Discussion: Despite distinct cultural differences, there was a clear discrepancy between patients' and caregivers' perspective on patients' well-being and preferences towards life in all three countries. This possible bias in caregivers' judgment needs to be taken into account in surrogate decision making. |
| Databáze: | OpenAIRE |
| Externí odkaz: |
|