Care and quality of life at the end of life
Veerbeek, Laetitia, Erasmus MC, University Medical Centre Rotterdam, Netherlands, van Zuylen, Lia, Erasmus MC-Daniel den Hoed Cancer Center, Rotterdam, Netherlands, Swart, Siebe, Nursing Home Antonius Ijsselmonde, Rotterdam, Netherlands, Voogt, Elsbeth, Erasmus MC, University Medical Centre Rotterdam, Netherlands, van der Heide, Agnes, Erasmus MC, University Medical Centre Rotterdam, Netherlands

Care for dying patients has to be distinguished from regular care. The quality of care for dying patients may be improved if we have a better insight in its goals and possibilities. The Integrated Care Pathway for the dying patient (ICP), as developed by Ellershaw and colleagues in the United Kingdom, has been shown to provide demonstrable care standards that can be used to monitor and improve the quality of care. The ICP has been translated into Dutch and tried out in three palliative care units of the Erasmus MC-Daniel and Nursing Home Antonius IJsselmonde. Until now it is unknown to what extent patients and their families appreciate the use of the ICP by caregivers. The possible effect of the ICP on the content of care and the quality of life during the last 48 hours of life is now being investigated in the Rotterdam region, in 4 academic hospital settings, 1 general hospital setting, 1 nursing home, 1 community home for the elderly and 1 home care setting. The use of care in the last three months before death as well as patient and family characteristics are taken into account. In phase I (baseline assessment), about 120 bereaved relatives and health care professionals are asked to fill out a questionnaire about the quality of life of the dying patient in the last 48 hours of his or her life. The content of the delivered care is registered on the basis of medical records and nursing records. In phase II, the ICP will be introduced under the supervision of nurses who gained experience with the ICP in the pilot study. After the introduction of the ICP, comparative data will be collected on about 120 patients who died and were or could have been cared for using the ICP. At baseline as well as after the implementation of the ICP we aim to include all patients who pass away during the study period, according to the "intention-to-treat principle". In order to evaluate the care and the quality of life of the dying patient, we developed a quantitative instrument that retrospectively measures physical, psychosocial and spiritual aspects of quality of life during the last 48 hours of life, as well as satisfaction with health care. The psychometric characteristics of the questionnaire are studied and optimized during a feasibility study among 30 patients.