END-OF-LIFE MEDICAL TREATMENT PREFERENCE DISCUSSIONS AND SURROGATE DECISION-MAKER APPOINTMENTS: EVIDENCE FROM ITALY, SPAIN, BELGIUM AND THE NETHERLANDS
- N Evans1,
- H R W Pasman1,
- T Vega Alonso2,
- L Van den Block3,
- G Miccinesi4,
- V Van Casteren5,
- G Donker6,
- S Bertolissi7,
- O Zurriaga8,9,10,
- L Deliens1,3,
- B Onwuteaka-Philipsen1,
- on behalf of EUROIMPACT1
- 1VU University Medical Center, EMGO Institute for Health and Care Research, Department of Public and Occupational Health, Expertise Center for Palliative Care, van der Boechorststraat 7, 1081 BT, Amsterdam, The Netherlands
- 2Public Health Directorate, Ministry of Health (Dirección General de Salud Pública, Consejería de Sanidad), Castille and León, Spain.
- 3End-of-Life Care Research Group, Vrije Universiteit Brussel, Belgium
- 4Clinical and Descriptive Epidemiology Unit, Cancer Prevention and Research Institute, ISPO, Florence, Italy
- 5Scientific Institute of Public Health (Wetenschappelijk Instituut Volksgezondheid, Institut Scientifique de Santé Publique), Brussels, Belgium
- 6NIVEL, Netherlands Institute of Health Services Research, Utrecht, the Netherlands.
- 7Italian Society of General Practice (SIMG—Società Italiana di Medicina Generale), Italy
- 8Public Health and Research General Directorate, Valencian Regional Health Administration, Valencia, Spain
- 9Higher Public Health Research Centre – Centro Superior de Investigacion en Salud Pública (CSISP), Valencia, Spain
- 10Spanish Consortium for Research on Epidemiology and Public Health, CIBERESP, Spain
Background Making treatment decisions in anticipation of possible future incapacity is an important part of patient participation in end-of-life decision-making.
Aim To compare the prevalence of GP-patient end-of-life treatment discussions and patient surrogate appointments in Italy, Spain, Belgium and the Netherlands and examine associated factors.
Methods A cross-sectional, retrospective survey was conducted with representative GP networks in four countries. GPs recorded the health and care characteristics in the last 3 months of life of patients who died non-suddenly. Prevalences were estimated and between country differences, and country-specific associated patient and care factors, were examined using logistic regressions.
Results 4396 non-sudden deaths were included. GP-patient discussion of treatment preferences occurred for 10%, 7%, 25% and 47% of Italian, Spanish, Belgian and of Dutch patients respectively. Furthermore, 6%, 5%, 16% and 29% of Italian, Spanish, Belgian and Dutch patients had a surrogate decision-maker. Despite some country-specific differences, previous GP-patient diagnosis discussions, more frequent GP contact, GP provision of palliative care, the importance of palliative care as a treatment aim and place of death were positively associated with preference discussions or surrogate appointments. A diagnosis of dementia was negatively associated with preference discussions and surrogate appointments. The single most important factor was prior GP-patient diagnosis discussion.
Discussion The study revealed a higher prevalence of treatment preference discussions and surrogate appointments in the two northern European countries.
Conclusion Delaying diagnosis discussions impedes anticipatory planning, whereas early discussions for all patients, particularly those with cognitive decline, and palliative care provision support patients' participation in decision-making.
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