title: Overcoming barriers to recruitment in care of the dying research in hospitals.
abstract: BACKGROUND
  Approximately 40% of the U.S. and 60% of the U.K. population die in hospital. Many reports have highlighted variability in the care received by these patients and national initiatives have proposed strategies to improve this care. No studies have demonstrated whether any improvements in end-of-life care have been achieved, as research in this area is challenging.
  
  
  OBJECTIVE
  We designed a study to assess the feasibility of a novel method of identifying patients likely to die during an acute hospital admission and a model of prior consent from patients and/or assent from their relatives.
  
  
  METHODS
  A study for collecting data on patients' symptoms before and after the introduction of an end-of-life tool (comprising medical and nursing checklists, prescribing guidance, and a symptom observation chart) within five wards in a major U.K. teaching hospital was conducted. We asked the screening question to a senior member of staff, "Is this patient so unwell that you feel they could die on this admission?" to identify appropriate patients, and recruited using the consent procedure. Patients were enrolled in the study if they became more unwell and data were then collected until they died.
  
  
  RESULTS
  In total, 6642 patients were screened. The ward staff answered "yes" to the screening question for 327 of 6642 (4.9%) patients. Patient's prior consent or relative's assent to enroll in the study was obtained for 117 of 327 (35.8%) patients, of whom 70 of 117 (59.8%) enrolled for the study and died within the study period. The staff found that the methods used were appropriate.
  
  
  CONCLUSIONS
  We have shown that identifying and involving dying patients in research is possible and acceptable to patients and carers.
authors.affiliation: Cornwall Hospice Care, St. Julia's Hospice, Hayle, Cornwall. janegibbins@hotmail.com
authors.forename: Jane
authors.initials: J
authors.lastname: Gibbins
authors.forename: Colette M
authors.initials: CM
authors.lastname: Reid
authors.forename: Sophia
authors.initials: S
authors.lastname: Bloor
authors.forename: Melanie
authors.initials: M
authors.lastname: Burcombe
authors.forename: Rachel
authors.initials: R
authors.lastname: McCoubrie
authors.forename: Karen
authors.initials: K
authors.lastname: Forbes
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001291:Attitude of Health Personnel; D001293:Attitude to Death; D001294:Attitude to Health; D035843:Biomedical Research / Q000379:methods / Q000706:statistics & numerical data*; D005240:Feasibility Studies; D005260:Female; D006760:Hospitalization / Q000706:statistics & numerical data*; D006801:Humans; D007258:Informed Consent / Q000706:statistics & numerical data*; D008297:Male; D008875:Middle Aged; D018579:Patient Selection; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000706:statistics & numerical data*; D019452:Terminally Ill / Q000706:statistics & numerical data*; D016896:Treatment Outcome; D006113:United Kingdom / Q000453:epidemiology; D055815:Young Adult