Recent advances in developing a national end of life care register


Session type:

Carl Johan F├╝rst
Karolinska Institutet, Stockholm, Sweden


Background: The Swedish Register of Palliative Care, SRPC, was initiated in 2005 to assess care in all care settings irrespective of cause of expected death. Sweden has ~9,5 milj inhabitants (2011) and ~90 000 death/year (all causes). The register receives national funding.
Methods: SRPC is web-based and registrations are made on line, The database gives immediate access to instantly updated statistical reports in different levels of detail. All patients with an expected death should be registered after death with demographic and diagnostic information and place of death. Registration is made by the caring team, based on knowledge of the actual situation and increasingly on documentation in the patient record. Quality indicators/parameters include for example pain and other common symptoms during the last week of care, drugs prescribed for the individual patient on demand, information to the patient and family about the expected death, patient choice of place of death and the presence of family and/or staff at the time of death. Some questions in the register are kept constant while others (e.g. oral care, iv fluid at death) can be replaced.
Results: During 2011, 53% of all deaths in Sweden were registered. Five regions/counties reached > 70%. For patients with cancer, 77% of all cases were registered and in six counties/regions >90% of all cancer deaths were registered. For units registering at least 10 deaths/year during 2009-2011 (n=438), total ~ 45 000, there was a statistically significant increase in prescribed injections on demand for pain, nausea, secretions and dyspnoea. The number of pressure ulcers at death was constant.
Conclusions: We believe that the increase in registrations and reports of better quality of end of life care reflect the implementation of the SRPC which also raise awareness of educational needs and care pathways to promote quality care.