Programmaleider Verpleging, Verzorging en Ouderenzorg; bijzonder hoogleraar 'Verpleging en verzorging in de laatste levensfase', Vrije Universiteit / Amsterdam UMC
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To move or not to move? Considerations about transfers to other care settings in the end-of life care of people with intellectual disabilities.
Bekkema, N., Veer, A.J.E. de, Wagemans, A.M.A., Hertogh, C.M.P.M., Francke, A.L. To move or not to move? Considerations about transfers to other care settings in the end-of life care of people with intellectual disabilities. European Journal of Palliative Care: 2013, p. 104. Abstract. In abstractbook. EAPC 2013. 13th World Congress of the European Association for Palliative Care (EAPC). 30 may - 2 june 2013, Prague.
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Background: Most people prefer to stay in their own environment until the end of their life. Familiarity is also an important value for people with Intellectual Disabilities (ID). However, end-of-life care at home may not always be the best option. A framework to guide relatives and care professionals in these decisions is lacking. Aim: To gain insight into the considerations of people with ID, relatives and care professionals when they are confronted with dilemma’s about care setting transfers at the end-of-life. Methods: Mixed methods were used: a literature study was performed to synthesize what was found about care setting transfers in this target group. Focus group discussions, using moral case deliberation, were used to elicit considerations about care setting transfers of relatives and care professionals. Nominal group technique was used to elicit considerations of people with ID. Questionnaires were sent to about 500 physicians, nurses and social workers to study considerations of a broader group of care professionals. Results: The wish for persons with ID to stay in their own environment can be in conflict with providing high quality end-of-life care. The wish to stay at home was based on ensuring emotional security and autonomy according to persons with ID, relatives as well as care professionals, and also reflected the wish of care professionals to care for their clients until they pass away. Elements that seemed to determine perceived quality of care were the available nursing competencies, self-confidence in providing end-oflife care, availability of 24-hour care and housing facilities. The emotional security of other residents also played a role. Conclusions: Choices about care setting transfers require an open attitude of relatives and care professionals to be able to identify and weigh all considerations and underlying values, such as respect for autonomy, emotional security of both the person with ID and other residents, and quality of care.
Background: Most people prefer to stay in their own environment until the end of their life. Familiarity is also an important value for people with Intellectual Disabilities (ID). However, end-of-life care at home may not always be the best option. A framework to guide relatives and care professionals in these decisions is lacking. Aim: To gain insight into the considerations of people with ID, relatives and care professionals when they are confronted with dilemma’s about care setting transfers at the end-of-life. Methods: Mixed methods were used: a literature study was performed to synthesize what was found about care setting transfers in this target group. Focus group discussions, using moral case deliberation, were used to elicit considerations about care setting transfers of relatives and care professionals. Nominal group technique was used to elicit considerations of people with ID. Questionnaires were sent to about 500 physicians, nurses and social workers to study considerations of a broader group of care professionals. Results: The wish for persons with ID to stay in their own environment can be in conflict with providing high quality end-of-life care. The wish to stay at home was based on ensuring emotional security and autonomy according to persons with ID, relatives as well as care professionals, and also reflected the wish of care professionals to care for their clients until they pass away. Elements that seemed to determine perceived quality of care were the available nursing competencies, self-confidence in providing end-oflife care, availability of 24-hour care and housing facilities. The emotional security of other residents also played a role. Conclusions: Choices about care setting transfers require an open attitude of relatives and care professionals to be able to identify and weigh all considerations and underlying values, such as respect for autonomy, emotional security of both the person with ID and other residents, and quality of care.