Dying in Germany—Unfulfilled Needs of Relatives in Different Care Settings

ContextThe integration of family members in the dying process and the recognition of their special needs are important factors for the development of high-quality palliative care.ObjectivesThis study aimed to explore important needs and personal experiences of relatives at the end of life, and to detect differences in these needs and experiences for various care settings.MethodsOur cross-sectional survey was based on a random sampling of 5000 inhabitants of Rhineland-Palatinate (Germany) who died between May 25 and August 24, 2008. Relatives of these randomly drawn deceased persons were interviewed by a written survey.ResultsA total of 1378 questionnaires were completed (response rate 36.0%), with 1337 eligible for our analyses; 81.5% of the bereaved totally/partially agreed that the information received from physicians was comprehensive and sufficient; 7.5% neither agreed nor disagreed; and 11.0% partially/totally disagreed. Of the respondents, 54.1% totally/partially agreed to having received emotional support by physicians, 14.2% neither agreed nor disagreed, and 31.7% partially/totally disagreed. Physicians in nursing homes and standard hospital wards were rated less favorably. Whereas the professionals' lack of time was strongly associated with the unfulfilled needs for emotional support, many relatives also lacked this type of care when physicians seemed to have enough time.ConclusionThe high rates of unfulfilled needs of relatives across all care settings and all types of diseases reinforce the necessity of a comprehensive palliative care approach. An increased awareness of the psychological vulnerability of caregivers should lead to dedicated efforts to improve deficits in the German health care system.