This study is part of a large study aiming at monitoring end-of-life care (MELC) in Belgium and The Netherlands. You will find more information on the MELC project at the project website. Here you will find information on the project in The Netherlands. Principal investigator is Ebun Abarshi, MD.
Investigators
EA Abarshi, MD
Background
To monitor the quality of end-of-life care in the Netherlands via
the sentinel network of general practitioners. A systematic and
continuous registration of relevant data, followed by retrospective
analysis of patients’ expectations concerning death will provide
information on what their recorded desires were and what forms of
care they eventually received. Based on this data, quality
indicators will be developed to monitor end-of-life care given
within and across care settings and patient populations. Problems of
patient-transfers, choice of care, type of care and place of death
especially around end-of-life abound and several patients do not die
in places of their choice. However scientific knowledge on this
problem, especially on a national scale is lacking.
Methods
A sentinel network is used to register morbidity retrospectively,
called the Continuous Morbidity Registration (CMR). This network
coordinates data collection from a representative sample of general
practitioners in the Netherlands on a regular basis. Relevant
questionnaires have been developed for collection of data on cause
of death, frequency of GP-patient contact, transfers, types of care
provided, patient preferences, medical decision making, and patient
outcomes.
Results
A study on the preferred place of death showed that 69% of the
patients preferred to die at home; 19% in a residential home, and
10% in a hospice. The remaining patients (2%) preferred to die in a
hospital. 45% of the GP’s were not aware of the patients’ wishes
regarding place of death. 45% of the patients did not die at their
preferred place of death. In the last 3 months of life, 43
distinct care trajectories and 709 transitions were identified.
Being male, having multiple morbidities, and the absence of
GP-awareness of a patient’s preferred place of death were associated
with having a transition in the last 30 days. Also being ≤ 85 years,
having an infection and the absence of a palliative-centred
treatment goal were associated with terminal hospitalisation for ≥ 7
days.