title: Patient evaluation of end-of-life care.
abstract: The Dutch health care system is characterized by a strong emphasis on primary care. To get insight into the strengths and gaps in end-of-life care in the Netherlands, data are needed about use and patient evaluation of end-of-life care. We assessed the experiences of patients with end-of-life care during the last months of life. We followed 128 patients with incurable lung, breast, ovarian, colorectal or prostate cancer. At inclusion they were interviewed personally at home. During follow-up, every 6 months, we asked them to fill out a questionnaire on the end-of-life care they had received. One-hundred of them died during the research period. Eighty-seven of the deceased patients were able to fill out a questionnaire in the last 6 months of their lives. They reported that, on average, 4.2 disciplines were involved in their care. Most patients indicated to be satisfied with the care offered by their caregivers. Problems in end-of-life care concerned communication, difficulties in coordination, accessibility of end-of-life care and responding quickly to acute problems. We conclude that comprehensive and interdisciplinary end-of-life care may address patients' needs, but that it simultaneously is a challenge to optimal communication among disciplines and between caregivers and the patient.
authors.affiliation: Erasmus MC, University Medical Center Rotterdam, Department of Public Health, Rotterdam, The Netherlands. e.voogt@erasmusmc.nl
authors.forename: Elsbeth
authors.initials: E
authors.lastname: de Vogel-Voogt
authors.forename: Agnes
authors.initials: A
authors.lastname: van der Heide
authors.forename: Anna F
authors.initials: AF
authors.lastname: van Leeuwen
authors.forename: Adriaan
authors.initials: A
authors.lastname: Visser
authors.forename: Carin Cd
authors.initials: CC
authors.lastname: van der Rijt
authors.forename: Paul J
authors.initials: PJ
authors.lastname: van der Maas
mesh_terms: D000368:Aged; D017028:Caregivers; D016009:Chi-Square Distribution; D003142:Communication; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology / Q000628:therapy; D009426:Netherlands; D017060:Patient Satisfaction; D010817:Physician-Patient Relations; D011446:Prospective Studies; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000379:methods / Q000592:standards*; D019452:Terminally Ill