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 Medjournal_title
Palliative medicineauthors
Lundström S,Axelsson B,Heedman PA,Fransson G,Fürst CJdoi
10.1177/0269216311414758subject
Has Abstractpub_date
2012-06-01 00:00:00pages
313-21issue
4eissn
0269-2163issn
1477-030Xpii
0269216311414758journal_volume
26pub_type
杂志文章abstract::Using Grounded Theory, this study examines the experience of 19 palliative care chaplains in counselling dying people. Taking a broad-based definition of counselling, and using unstructured individual interviews and group work, the study aimed to understand how palliative care chaplains work with patients at the point...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216310380297
更新日期:2011-01-01 00:00:00
abstract::This systematic review evaluates the evidence underpinning the provision of palliative day care services (PDS) to determine whether such services have a measurable effect on attendees' wellbeing. The majority of studies reviewed were qualitative and elicited individual perceptions of the benefits PDS. Although it was ...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1177/0269216310381796
更新日期:2011-03-01 00:00:00
abstract:PURPOSE/OBJECTIVE:Patients with cancer or symptoms referable to cancer therapy were offered acupuncture as potential palliation of their symptoms. This paper describes the physical integration of the discipline into the Oncology Clinic, and patient perspectives on its availability and efficacy. PATIENTS AND METHODS:Be...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/0269216302pm540oa
更新日期:2002-05-01 00:00:00
abstract::Increasing emphasis is being placed on the need for advanced care planning (ACP) at the end of life. The Preferred Priorities for Care (PPC) document is a patient-held record promoted by the End of Life Care Strategy as an ACP tool to promote discussion and communication amongst patients, family and health care provid...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216311399664
更新日期:2012-03-01 00:00:00
abstract::This paper describes the development and content of palliative care residential workshops for general practitioner/district nurse pairs from the same practice. Pre- and post-testing self-rating scales were completed by the participants of five workshops. A retrospective questionnaire identified perceived effects on pr...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/026921639300700103
更新日期:1993-01-01 00:00:00
abstract:BACKGROUND:Legacy has been invoked as a means for strengthening human attachments, continuing bonds, and ensuring that individuals will be remembered; however, little is known about the spectrum of approaches to, outcomes associated with, and best practices for legacy interventions. AIM:To systematically review resear...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216321989565
更新日期:2021-01-25 00:00:00
abstract:BACKGROUND:The lack of a clear definition of the palliative care patient hampers the comparison of results across different studies and impedes implementation of research findings in everyday practice. AIM:The aim of this article is to propose minimum characteristics that define a palliative care patient. DESIGN:The ...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1177/0269216311435268
更新日期:2013-03-01 00:00:00
abstract:BACKGROUND:While there have been some studies looking at the impact on quality of life of patients with idiopathic pulmonary fibrosis, to date no qualitative research looking at the specialist palliative needs of these patients has been conducted. AIM:This study aims to explore the specialist palliative care needs of ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216313497226
更新日期:2013-10-01 00:00:00
abstract:BACKGROUND:We have undertaken a systematically searched literature review using a realist logic of analysis to help synthesise the diverse range of literature available on hospice at home services. AIM:To find out in the existing literature what features of hospice at home models work best, for whom and under what cir...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216319867424
更新日期:2020-01-01 00:00:00
abstract::This study compares terminally ill patients and their family caregivers in terms of the physical and emotional status of the patients, the adequacy of the support provided for the patients and where the patients would be most appropriately placed during the last stage of their lives. Patients and caregivers shared sim...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/026921639300700204
更新日期:1993-01-01 00:00:00
abstract:BACKGROUND:People with dementia requiring palliative care have multiple needs, which are amplified in long-term care settings. The European Association for Palliative Care White Paper offers recommendations for optimal palliative care in dementia integral for this population, providing useful guidance to inform interve...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216319900141
更新日期:2020-04-01 00:00:00
abstract:BACKGROUND:Intrathecal drug delivery is known to reduce pain in patients where conventional systemic analgesia has been ineffective or intolerable. However, there is little information regarding the effects of intrathecal drug delivery on quality of life and function in those with advanced, incurable cancer. AIM:Retro...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216317723777
更新日期:2018-01-01 00:00:00
abstract:BACKGROUND:Cancer-associated thrombosis is common. Recommended treatment is daily injected low-molecular-weight heparin for 6 months. Most studies focus on prophylaxis and treatment; few have explored the patients' experience. AIMS:To identify and synthesise the available literature concerning patients' experience of ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216318757133
更新日期:2018-05-01 00:00:00
abstract:BACKGROUND:Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking. AIM:To evaluate perceived psychological support in relation to end-of...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216319888986
更新日期:2020-03-01 00:00:00
abstract:BACKGROUND:The Gold Standards Framework (GSF) was developed to improve the delivery of palliative care in general practice. AIM:The aim of the study was to evaluate the first phase of GSF in terms of its acceptability to primary care teams, effectiveness in changing practice and professionals' views on the consequence...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216306072501
更新日期:2007-01-01 00:00:00
abstract:BACKGROUND:The Liverpool Care Pathway was used in UK hospitals (late 1990s to July 2014) in an attempt to generate hospice-style high-quality end-of-life care in acute settings. Despite being widely established, there was limited research or contextual evidence regarding this approach or its impact. Growing criticism f...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216316679927
更新日期:2017-10-01 00:00:00
abstract:BACKGROUND:Making palliative care accessible to all citizens who are in need of this type of care requires effective policies and education. Moreover, healthcare professionals have an ethical and legal responsibility to ensure quality palliative care. Nevertheless, palliative care has had traditionally a limited emphas...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216316639794
更新日期:2016-10-01 00:00:00
abstract::Objective of this study is to examine physicians' practices regarding information disclosure to terminally ill patients and to their relatives, without informing the patient. A questionnaire had been sent to a random sample of 3014 Belgian physicians from different specialties frequently involved in end-of-life care. ...
journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
doi:10.1177/0269216308102043
更新日期:2009-06-01 00:00:00
abstract:BACKGROUND:ENABLE (Educate, Nurture, Advise Before Life Ends) II was one of the first randomized controlled trials (RCTs) examining the effects of a concurrent oncology palliative care intervention on quality of life, mood, and symptom control for advanced cancer patients and their caregivers. However, little is known ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216312445188
更新日期:2013-04-01 00:00:00
abstract:BACKGROUND AND AIMS:Palliative medicine is not recognized as a medical specialty in any of the five Nordic countries, but there is a great need for physicians with specialty qualifications to serve on an increasing number of palliative care services. The Associations for Palliative Medicine in the five countries agreed...
journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
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更新日期:2008-04-01 00:00:00
abstract:BACKGROUND:Early palliative care improves quality of life during life-prolonging treatment for patients with cancer, but the role of nurses in facilitating the early involvement of palliative care is unclear. AIM:To conceptualize the psychosocial processes involved in the introduction and provision of palliative care ...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216319883980
更新日期:2020-02-01 00:00:00
abstract::The frequency of the use of laxatives, and the relationship between doses of laxatives and of opioid analgesia, were determined by a prospective study of 498 hospice inpatients with advanced cancer. Laxatives were required by 87% of patients taking oral strong opioids, 74% of those on weak opioids and 64% of those not...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/026921698674125048
更新日期:1998-09-01 00:00:00
abstract:BACKGROUND:No systematic meta-analysis is available on the prevalence of cancer patients' accurate prognostic awareness and differences in accurate prognostic awareness by publication year, region, assessment method, and service received. AIM:To examine the prevalence of advanced/terminal cancer patients' accurate pro...
journal_title:Palliative medicine
pub_type: 杂志文章,meta分析,评审
doi:10.1177/0269216316663976
更新日期:2017-05-01 00:00:00
abstract:BACKGROUND:Understanding current patterns of functional decline will inform patient care and has health service and resource implications. AIM:This prospective consecutive cohort study aims to map the shape of functional decline trajectories at the end of life by diagnosis. DESIGN:Changes in functional status were me...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216319839024
更新日期:2019-06-01 00:00:00
abstract::In this population-based study, we found that parents who are aware that their child will die from a malignancy are more likely to care for their child at home during the child's last month of life compared to parents who are not aware. End-of-life home care was comparable to hospital care for satisfactory pain relief...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/0269216306pm1139oa
更新日期:2006-04-01 00:00:00
abstract::Cyclizine is an antihistamine, which is frequently used to manage nausea and vomiting in cancer patients. Antihistamines can be drugs of misuse/abuse, and the article describes four cancer patients who developed such problems after receiving parenteral cyclizine within the inpatient unit of a cancer centre. The articl...
journal_title:Palliative medicine
pub_type: 杂志文章,评审
doi:10.1177/0269216308094337
更新日期:2008-10-01 00:00:00
abstract:BACKGROUND:Depressive disorders are common among cancer patients. Ketamine can quickly relieve depression, and its subcutaneous administration appears to be as effective as and probably safer than its standard intravenous administration. Herein, we report a case verifying the antidepressant effect of a subcutaneous esk...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216320910351
更新日期:2020-06-01 00:00:00
abstract:BACKGROUND:the right for patients of all diagnoses to be in receipt of palliative care from an early point in the diagnosis of a life-limiting condition is now enshrined in policy in a number of countries and increased emphasis is placed upon the role of generalist palliative care. However, little is known as to how th...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1177/0269216311408993
更新日期:2012-04-01 00:00:00
abstract:OBJECTIVES:To identify and explore the educational needs of children's hospice doctors in England. DESIGN:A descriptive quantitative and qualitative survey. SETTING:Children's hospices in England. PARTICIPANTS:All children's hospice doctors (n =55) in England were approached, and 35 (65%) consented. INTERVENTIONS:A...
journal_title:Palliative medicine
pub_type: 杂志文章
doi:10.1191/0269216304pm902oa
更新日期:2004-12-01 00:00:00
abstract::The subject of communication between palliative care physicians and their patients regarding their diagnosis and prognosis has not been extensively researched. The purpose of this survey was to compare the attitudes and beliefs of palliative care specialists regarding communication with the terminally ill in Europe, S...
journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
doi:10.1191/026921600674582192
更新日期:2000-07-01 00:00:00