Abstract
Decisions to prolong or shorten life in fatal diseases like amyotrophic lateral sclerosis are strongly influenced by healthy individuals, such as caregivers and physicians. Furthermore, many believe that amyotrophic lateral sclerosis (ALS) patients should decide ahead of time on advanced directives to circumvent confounding effects of subsequent cognitive impairments. The ability of healthy persons (caregivers and age-matched healthy subjects) to anticipate patients' quality of life (QoL), depression and vital decisions was determined in a cross-sectional approach. Eighty-nine ALS patients, 86 caregivers and 102 age-matched healthy subjects were asked to judge ALS patients' QoL and depression and the patients' wish for hastened death. Patients judged their own, the caregivers judged that of the patient under their care, healthy subjects were asked to judge that of a virtual patient. Additionally, healthy persons were asked to judge their own QoL and depression. Patients reported a satisfactory well-being and a low wish for hastened death. Healthy persons rated the patients' QoL significantly lower and the rate of depression significantly higher. The wish for hastened death was significantly lower in the patient group compared to what healthy subjects thought the patient would wish. The assessment by others was closely related to the persons' own well-being. Significant differences were identified between caregiver's perspectives and the patient's own perception of their psychological well-being. Our data suggest that caregivers and the general public significantly underestimate the QoL of ALS patients. A positive affective state can indeed be preserved in a progressive, fatal disease.
| Original language | English |
|---|---|
| Pages (from-to) | 2836-2843 |
| Number of pages | 8 |
| Journal | Journal of Neurology |
| Volume | 260 |
| Issue number | 11 |
| DOIs | |
| Publication status | Published - Nov 2013 |
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Keywords
- Amyotrophic lateral sclerosis
- Caregiver
- Decisions
- Depression
- Fatal
- Quality of life
ASJC Scopus subject areas
- Clinical Neurology
- Neurology
Cite this
Quality of life in fatal disease : The flawed judgement of the social environment. / Lulé, Dorothée; Ehlich, Benedikt; Lang, Dirk; Sorg, Sonja; Heimrath, Johanna; Kübler, Andrea; Birbaumer, Niels; Ludolph, Albert C.
In: Journal of Neurology, Vol. 260, No. 11, 11.2013, p. 2836-2843.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - Quality of life in fatal disease
T2 - The flawed judgement of the social environment
AU - Lulé, Dorothée
AU - Ehlich, Benedikt
AU - Lang, Dirk
AU - Sorg, Sonja
AU - Heimrath, Johanna
AU - Kübler, Andrea
AU - Birbaumer, Niels
AU - Ludolph, Albert C.
PY - 2013/11
Y1 - 2013/11
N2 - Decisions to prolong or shorten life in fatal diseases like amyotrophic lateral sclerosis are strongly influenced by healthy individuals, such as caregivers and physicians. Furthermore, many believe that amyotrophic lateral sclerosis (ALS) patients should decide ahead of time on advanced directives to circumvent confounding effects of subsequent cognitive impairments. The ability of healthy persons (caregivers and age-matched healthy subjects) to anticipate patients' quality of life (QoL), depression and vital decisions was determined in a cross-sectional approach. Eighty-nine ALS patients, 86 caregivers and 102 age-matched healthy subjects were asked to judge ALS patients' QoL and depression and the patients' wish for hastened death. Patients judged their own, the caregivers judged that of the patient under their care, healthy subjects were asked to judge that of a virtual patient. Additionally, healthy persons were asked to judge their own QoL and depression. Patients reported a satisfactory well-being and a low wish for hastened death. Healthy persons rated the patients' QoL significantly lower and the rate of depression significantly higher. The wish for hastened death was significantly lower in the patient group compared to what healthy subjects thought the patient would wish. The assessment by others was closely related to the persons' own well-being. Significant differences were identified between caregiver's perspectives and the patient's own perception of their psychological well-being. Our data suggest that caregivers and the general public significantly underestimate the QoL of ALS patients. A positive affective state can indeed be preserved in a progressive, fatal disease.
AB - Decisions to prolong or shorten life in fatal diseases like amyotrophic lateral sclerosis are strongly influenced by healthy individuals, such as caregivers and physicians. Furthermore, many believe that amyotrophic lateral sclerosis (ALS) patients should decide ahead of time on advanced directives to circumvent confounding effects of subsequent cognitive impairments. The ability of healthy persons (caregivers and age-matched healthy subjects) to anticipate patients' quality of life (QoL), depression and vital decisions was determined in a cross-sectional approach. Eighty-nine ALS patients, 86 caregivers and 102 age-matched healthy subjects were asked to judge ALS patients' QoL and depression and the patients' wish for hastened death. Patients judged their own, the caregivers judged that of the patient under their care, healthy subjects were asked to judge that of a virtual patient. Additionally, healthy persons were asked to judge their own QoL and depression. Patients reported a satisfactory well-being and a low wish for hastened death. Healthy persons rated the patients' QoL significantly lower and the rate of depression significantly higher. The wish for hastened death was significantly lower in the patient group compared to what healthy subjects thought the patient would wish. The assessment by others was closely related to the persons' own well-being. Significant differences were identified between caregiver's perspectives and the patient's own perception of their psychological well-being. Our data suggest that caregivers and the general public significantly underestimate the QoL of ALS patients. A positive affective state can indeed be preserved in a progressive, fatal disease.
KW - Amyotrophic lateral sclerosis
KW - Caregiver
KW - Decisions
KW - Depression
KW - Fatal
KW - Quality of life
UR - http://www.scopus.com/inward/record.url?scp=84889591765&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84889591765&partnerID=8YFLogxK
U2 - 10.1007/s00415-013-7068-y
DO - 10.1007/s00415-013-7068-y
M3 - Article
C2 - 23989341
AN - SCOPUS:84889591765
VL - 260
SP - 2836
EP - 2843
JO - Journal of Neurology
JF - Journal of Neurology
SN - 0340-5354
IS - 11
ER -