• Staffan Lundström, Bertil Axelsson, Per-Anders Heedman, Greger Fransson, and Carl Johan Fürst.
• Stockholms Sjukhem Foundation and Karolinska Institute, Stockholm, Sweden. staffan.lundstrom@stockholmssjukhem.se
• Palliat Med. 2012 Jun 1; 26 (4): 313-21.

BackgroundThe complexity of end-of-life care, represented by a large number of units caring for dying patients, different types of organizations and difficulties in identification and prognostication, signifies the importance of finding ways to measure the quality of end-of-life care.AimTo establish, test and manage a national quality register for end-of-life care.DesignTwo questionnaires were developed with an attempt to retrospectively identify important aspects of the care delivered during the last week in life. An internet-based IT platform was created, enabling the physician and/or nurse responsible for the care during the last week in life to register answers online.SettingUnits caring for dying people, such as hospital wards, home care units, palliative in-patient care units and nursing facilities.ResultsThe register received status as a National Quality Register in 2006. More than 30,000 deaths in nursing facilities, hospital wards, palliative in-patient units and private homes were registered during 2010, representing 34% of all deaths in Sweden and 58% of the cancer deaths.ConclusionsWe have shown that it is feasible to establish a national quality register in end-of-life care and collect data through a web-based system. Ongoing data analyses will show in what way this initiative can lead to improved quality of life for patients and their families. There is an ongoing process internationally to define relevant outcome measures for quality of care at the end-of-life in different care settings; the registry has a potentially important role in this development.

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