Abstract
BackgroundMaking treatment decisions in anticipation of possible future incapacity is an important part of patient participation in end-of-life decision-making. This study estimates and compares the prevalence of GP-patient end-of-life treatment discussions and patients’ appointment of surrogate decision-makers in Italy, Spain, Belgium and the Netherlands and examines associated factors.MethodsA cross-sectional, retrospective survey was conducted with representative GP networks in four countries. GPs recorded the health and care characteristics in the last three months of life of 4,396 patients who died non-suddenly. Prevalences were estimated and logistic regressions were used to examine between country differences and country-specific associated patient and care factors.ResultsGP-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 discussion of primary diagnosis, 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.ConclusionsThe study revealed a higher prevalence of treatment preference discussions and surrogate appointments in the two northern compared to the two southern European countries. Factors associated with preference discussions and surrogate appointments suggest that delaying diagnosis discussions impedes anticipatory planning, whereas early preference discussions, particularly for dementia patients, and the provision of palliative care encourage participation.
Highlights
The nature of the patient-physician relationship has changed considerably over the last forty years with patient autonomy and participation in decision-making increasingly recognised [1]
Just under a third of patients in Italy, Spain and Belgium suffered from dementia (29–31%), compared with 13% of Dutch patients
Further qualitative research on the patientphysician communication process may help in understanding the complex reasons for between country differences. Discussion of both medical EoL treatment preferences and surrogate appointments were highest in the Netherlands, followed by Belgium, with no significant differences between Spain and Italy
Summary
The nature of the patient-physician relationship has changed considerably over the last forty years with patient autonomy and participation in decision-making increasingly recognised [1]. For patients receiving end-of-life (EoL) care, participation includes preparation for possible future incapacity. The most well known form of anticipatory decision-making is an advance directive. Advance directives are documents that outline treatments that a patient considers acceptable in the event that he or she can no longer communicate or that designate a surrogate decision-maker to make treatment choices on the patient’s behalf [2]. Even in the US, where advance directives are actively promoted and legally binding, uptake amongst the general public remains low, at around 20% [3,4]. Making treatment decisions in anticipation of possible future incapacity is an important part of patient participation in end-of-life decision-making. This study estimates and compares the prevalence of GP-patient end-of-life treatment discussions and patients’ appointment of surrogate decision-makers in Italy, Spain, Belgium and the Netherlands and examines associated factors
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