Developing a national quality register in end-of-life care: the Swedish experience.

Abstract:

BACKGROUND:The 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. AIM:To establish, test and manage a national quality register for end-of-life care. DESIGN:Two 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. SETTING:Units caring for dying people, such as hospital wards, home care units, palliative in-patient care units and nursing facilities. RESULTS:The 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. CONCLUSIONS:We 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.

journal_name

Palliat Med

journal_title

Palliative medicine

authors

Lundström S,Axelsson B,Heedman PA,Fransson G,Fürst CJ

doi

10.1177/0269216311414758

subject

Has Abstract

pub_date

2012-06-01 00:00:00

pages

313-21

issue

4

eissn

0269-2163

issn

1477-030X

pii

0269216311414758

journal_volume

26

pub_type

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