Personal dignity in the terminally ill from the perspective of caregivers: a survey among trained volunteers and physicians.
BACKGROUND
Although dignity is increasingly considered a goal of palliative care, little research has evaluated the understanding of dignity at the end of life from a caregiver's perspective.


OBJECTIVE
The study objective was to investigate and compare the views of trained volunteers and SCEN physicians on maintaining dignity for patients reaching the end of life.


METHODS
The study is a survey questionnaire study.


METHODS
Subjects were two groups of caregivers involved in care for dying patients: trained volunteers (n=236) and end-of-life consultants (SCEN physicians; n=427).


METHODS
Measurement was done via the Dutch version of the 22-item Patient Dignity Inventory on symptoms and experiences that have been shown to influence the sense of dignity in terminally ill patients. Respondents were asked to rate on a five-point scale the extent to which they considered the items as influential on dignity in terminally ill patients, and as problematic in practice in maintaining dignity for patients in the last phase of life.


RESULTS
Overall, volunteers indicated items more frequently as influential to dignity and as problematic in maintaining dignity at the end of life, compared to SCEN physicians. Volunteers gave significantly higher ratings than SCEN physicians to most of the social items, and to half of the psychological and existential items.


CONCLUSIONS
It seems that SCEN physicians consider the physical aspects of suffering to be most influential and problematic in practice in preserving dignity, while volunteers think psychosocial aspects are most important in preserving dignity at the end of life. These findings suggest that the role and responsibilities of caregivers involved in care for terminally ill patients affect the factors that they think influence dignity.
1 Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Center , Amsterdam, the Netherlands .
Gwenda
G
Albers
Henrica C W
HC
de Vet
H Roeline W
HR
Pasman
Luc
L
Deliens
Bregje D
BD
Onwuteaka-Philipsen
D001293:Attitude to Death; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D010166:Palliative Care; D010820:Physicians / Q000523:psychology*; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology; D019452:Terminally Ill / Q000523:psychology*