BMC palliative care
-
BMC palliative care · Jul 2015
'From activating towards caring': shifts in care approaches at the end of life of people with intellectual disabilities; a qualitative study of the perspectives of relatives, care-staff and physicians.
Professionals and relatives increasingly have to deal with people with intellectual disabilities (ID) who are in need of end-of-life care. This is a specific type of care that may require a different approach to the focus on participation that currently characterizes the care for people with ID. This paper describes the shifts in care approaches and attitudes that relatives and professionals perceive as the death of a person with ID approaches, as well as the values underlying these shifts. ⋯ End-of-life care for people with ID involves curtailing expectations of participation and skill acquirement, and an increase in teamwork featuring intensified comforting care, symptom management and medical decision making. Three caring relationships need to be fostered: the relationship with the person with ID, relationships among professionals and the relationship between relatives and professionals. ID care services should invest particularly in the emotional support and expertise level of care staff, and in the collaboration between relatives and professionals.
-
BMC palliative care · Jul 2015
Case management in primary palliative care is associated more strongly with organisational than with patient characteristics: results from a cross-sectional prospective study.
Case managers have been introduced in Dutch primary palliative care; these are nurses with expertise in palliative care who offer support to patients and informal carers in addition to the care provided by the general practitioner and home care nurses. This study aims to describe support and investigate what characteristics of patients and the organizational setting are related to the number of contacts and to the number of times topics are discussed between the case manager and patients and/or informal carers. ⋯ Support offered by the case managers is prompted by characteristics of the organization for which they work. This is contradictory to the idea of patient centered care highly valued in palliative care.